Marlee -WEED: The Story of Charlotte's Tangled Web

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Marlee hugging Lulu her seizure response service dog. Lulu came from Canine Assistance in Alpharetta Georgia. Marlee was on a five year wait to receive a service dog. Saint Augustine, Florida. April 19, 2015

Marlee hugging Lulu her seizure response service dog. Lulu came from Canine Assistance in Alpharetta Georgia. Marlee was on a five year wait to receive a service dog. Saint Augustine, Florida. April 19, 2015

MAKING PICTURES MATTER

                  FIGHT THE GOOD FIGHT

                                         DO THE RIGHT THING

                                DAILY DOSE

  Cannabis oil on the left VS harmful pharmaceuticals on the right

Marlee receives cannabis oil twice a day. The white substance is coconut oil and the black substance that is the size of one rice grain is the cannabis oil.

I would like you to meet Marlee. Marlee recently turned 15 years old, she suffers from epilepsy and autism. Rather than telling you her story in an interview format, I think simply sharing with you what Michelle, Marlee's mother has written would be best.  Michelle shares with you Marlee's beginning to where she is today.

First I just want to tell you about my first encounter with Marlee.  Marlee can not speak much, but she does communicate through her actions. Within the first few moments I could tell she was a very sweet and happy little girl. Right away Marlee took me by the hand. That was a huge sign her mom had told me. She isn't apt to do that very often to strangers, so hearing that made the moment feel very special.

Marlee greeting her dad Max after arrving home from a trip. Saint Augustine, FL. April 19, 201

Marlee greeting her dad Max after arrving home from a trip. Saint Augustine, FL. April 19, 201

 

Marlee was born, Marlena Alexis Vinzant on March 29, 2000. Here is Marlee's story in her mother's words:

"MV had her first seizure at the age of 7 mos.  Her second seizure happened one month later and lasted over 10 min.  She experienced temporary paralysis on one side of her body.  She was admitted to Nemours Children’s Hospital in Jacksonville, FL for evaluation.  There she was under the care of Dr. David Hammond.  He prescribed Phenobarbital.  Her seizures continued to increase and Clonazepam was added on 4/02/01.  She began experiencing several different seizure types. Generalized tonic-clonic, atonic, and absence.  At the point that hundreds of atonic seizure were occurring daily, Sept 2001, a second opinion was requested.  She was spiraling out of control.  Dr. Daria Marrinzini admitted her to Nemours for additional evaluation.  This began the road to searching for answers.  She was admitted to the Cleveland Clinic in Ohio, under the care of Dr. Elaine Wiley, to see if she was eligible for brain surgery Nov. 2001.  She is not eligible due to her seizures being generalized.  From there MV was admitted to St. Joe’s Children’s Hospital in Tampa, FL, under the care of Dr. Jose Ferreira, for the purpose of beginning the Ketogenic Diet.  After the introduction of the diet there was significant reduction in seizure activity.  However, after 3 ½ years on the diet it became ineffective.    She was then referred to Dr. Juan Ochoa, UF Jax, by Dr. Ferreira.  He felt that a local neurologist was a better for managing her care.  Dr. Ochoa is currently published for his research and success with Ceralyte electrolyte therapy controlling absence seizures.  MV  drank 1 liter a day and it controlled her absence seizures for a period of approx 2 years.  The electrolyte therapy was discontinued Aug 2009 due to the initiation of the ketogenic diet, again.  The bag of tricks at this point was very limited.  We and the doctors had tried EVERYTHING to get some sort of control.   She is currently still experiencing generalized tonic-clonic seizures, (approx.5-6 a week).  The Vagus Nerve Stimulator was implanted in Oct. of 2007.  This has not reduced the frequency of her seizures.  However, the magnet is beneficial in reducing the length of her seizures.  She currently is under the primary care of Dr. Paul Carney at UF Gainesville.  He suggested we get her screened for autism.  She was diagnosed Aug. 1, 2008 with autism spectrum disorder.  She is currently labeled Other Health Impaired, Language Impaired, OT, PT and speech impaired and Intellectually disabled.  We have applied for Social Security Disability two times and been denied.  We have applied for several different grants to help absorb medical costs and been denied.  In May of 2010 we organized a fundraiser to cover the cost of placental stem cell treatment in Mexico and we far exceeded our goal.  We traveled to Mexico and under the care of Dr. Omar Gonzales, Marlena had placental stem cell treatment.  She had six injections in her head and four implants in her back.  We also have paired the stem cell treatment with Hyperbaric oxygen therapy.  We unfortunately found no positive gain as a result of the treatment..  The long road continues…We have concluded our hyperbaric therapy….no results …..not our deal.  Marlee was admitted to Miami Children’s Hospital from Oct 11 – 15th, 2010, to have more tests.  Nothing new.… It’s the med game….  We have been researching MMJ for years and have currently began CBD, Jan 2015.  We are hoping that this will be our miracle!"


Hospitalizations

Dec 2000                     Nemours Children’s Hospital Jacksonville, FL – 1st treatment 

Sept 2001                    Nemours Children’s -  video EEG, CAT, MRI, PET

Nov 2001                    Cleveland Clinic, Cleveland, OH - Video monitoring

Feb 2002                     St Joseph’s Children’s Hospital, Tampa, FL - Keto diet

Feb 2004                     St Joseph’s Children’s Hospital – video EEG

March 2005                 Cleveland Clinic – video monitoring

Dec 7th & 8th 2005       Ambulatory EEG UF Jax

Oct 2007                     UF Shands Jacksonville- VNS implanted

March 2008                 UF Shands Gainesville – EEG video monitoring

Jan  2009                     UF Shands Gainesville -  Sleep Study

July 2009                     UF Shands Gainesville – 24hr video EEG monitoring  baseline

Aug 2009                    UF Shands Gainesville – Administration of Ketogenic Diet

Nov 2009                    UF Shands Gainesville – 5 hr EEG

Oct 2010                     Miami Children’s Hospital EEG monitoring, CAT and PET scan

July 2014                     UF Pediatric ER 2 hour long seizure

Jan 2015                      Ambulance to Flagler ER Status

Feb 2015         Status  Flagler hospital- ambulance transport to UF Shands admitted to PICU..Three night stay

As well as numerous ER visits.

Ketogenic Diet           Jan 2002 – Sept 2005

                                    Ratios

Jan 2002                      3.5/1                July 28, 05       2.75/1             

July 2003                     4/1                   Aug 6, 05        2.5/1

April 04                       3/1                   Aug 22, 05      2.25/1

Feb 05                         3.5/1                Sept 8, 2005    Stopped diet

June 17, 05                  3.25/1

Began Diet again…..  Gainesville

Aug 3, 2009 – Feb 3rd, 2010  not at all effective…no reduction in seizures.

Longest Seizures

April 23, 2003             27 min                         June 23, 2009, cluster 11 seizures over 48hr.

July 7, 2003                 7 min                           Oct 23, 2009  15 min

Aug 12, 2003              23 min.                        Nov 5, 2009 8 min

April 12, 2008             10 min.                        Nov 9, 2009 10 min

June 14, 2010 6 seizures                                 Nov. 26, 2009  7 min.

June 30, 2010 3 seizures                                 many more….too many to list

Diastat administered

11/28/12….stopped updating, too many to list

Jan 19th, 2015              30 min Status   hospital

Feb 7, 2015                 5 seizures status  hospital

Alternative Treatments

Cranio Sacral                           March 2006 – Nov 2006

Reflexology                            Jan 2007-Sept 2007

Ketogentic Diet                      Jan 2002 – Sept 2005, Aug 2009 – Feb 2010

Electrolyte Therapy                 Oct 2005 – Aug 2009

Neuro-optic Analysis              May 2005

Faith Healer                            March 2005, June 2005

Vagus Nerve Stimulator         Oct 2007

Reflexology/Reikki                 6 mo. 2009

Stem Cell Treatment               May 31st , 2010

Dr. Omar Gonzalaz… Placental stem cells; 6 injections in head and 4 implants in back.

Hyperbaric Oxygen Therapy   May 24th, 2010 – July 4th 2010

Acupuncture Sept 2010 –Feb 2010  - (once a week)

CBD                                        2014/2015

Frankencense                          drop under nose and on feet during seiaure

Testing

MRI                – normal         Gainesville, March 2008

PET                 Nov 01            ,           no significant abnormality

PET                 Oct 10             Miami Children’s Hospital

CAT                Oct 10             Miami Children’s hospital

Spinal Tap        March 2006    Normal Glucose, rules out glucose transport def.

Neuropsychological Report    UF Gainesville, March 2008

MEG scan       April 2008       University of Alabama – Birmingham not eligible for brain

                                                surgery.

Autism Screening                    UF Gainesville, Dr. Carlos Rodriquez –

                                                Diagnosis – Autism disorder Aug. 1, 2008

Sleep Study     Jan 2009          UF Gainesville – results mild sleep apnea,  referred to ENT

Pertinent History

Birth History:  Pregnancy normal. 32 lbs. gained.  Natural birth, very quick, 1 hour 44 min from first contraction to birth.  Induced at 10 days past due date due to fluxuation of baby’s heartbeat.  The cord was around MV’s neck when she was born.  Blue and floppy.  1 min APGAR- 4,  5 min APGAR – 9.  Oxygen was administered.  Birth weight 7lb. 13oz.,  21 ½ length.  MV was breast fed exclusively for first 5 mo.  Solids were introduced.  Breast feeding continued until 13 mo.

Developmental History

Normal until onset of seizures (7 mo.) two weeks after vaccinations.   Developmental progression has been abnormal since.  Speech is impaired. 17 mo. 1st word – Da for DaDa, 23 mo. Said MaMa.  12 mo. !st step, 21 months walking independently.  Has been in OT, PT, and ST since 14 mo.  MV  attended Otis Mason Elementary where her father is a teacher until the age of 8, 2nd grade.  She is now attending a full time specialized class at Gamble Rogers Middle.  She currently needs one on one assistance with her academics.  She has an extensive IEP and is labeled other health impaired Language Impaired, OT, PT and speech impaired and Intellectually disabled.

Past Medical History and Epilepsy Risk Factors

There is no history of significant head trauma, central nervous system infections or febrile seizures.

Family History:  Marlene lives with both her parents and has no siblings.  She loves to feed and her dog named Oakley Onions and in Jan of 2013 she received Lulu her seizure response service dog through Canine Assistance of Alpharetta, GA.   There is no family history of epilepsy or other chronic neurological conditions.  Mother is adopted.

Medications Tried                 Max Dose                   Doc                 Date      

Carbatrol (Carbamazepine)     100mg 3xday              Hammond       05/01

Lamictal                                                                      Carney

Depakote                                 375 BID         

Mysoline                                                                     Hammond       06/01

Diastat                                     15 mg                          current

Penobarbitol                            15mg                           Hammond       12/00

Gabatril                                   short lived                  

Tegretol

Keppra                                    250BID                       Ferreira            04/04                          

Topamax                                 15mg-BAD shakes      Marranzini       09/01

Klonapin                                 .5 3xdaily                    Hammond       04/01  

Trileptal                                   225mg/300mg             Ferreira            12/04-07/06

Zonegran                                 200mg                         Ochoa              03/06-12/06    

Banzel                                     800mg                         Carney             2015

                                                (restless sleep)

Vimpat                                                150mg                         Carney             2014

Onfi     (tremulous)                  25mg per day              Carney             10/09/12

Vimpat 200mg            AM

              200mg           PM

Banzel 600mg             BID

Clonazepam 1mg        BID

CBD                            1 grain of rice size in coconut oil BID














ADVOCATE, EDUCATE, & INSPIRE

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Become a sponsor

Please consider donating any amount to support the work in progress, Charlotte's Tangled Web' in an upcoming group exhibition that will be at the Orlando Museum of Art opening June 11th, 2015. Your donation is to help assist with exhibition costs. Realizing this is a complex and controversial issue, our goal is to change the public's perception by educating and advocating for those suffering who are in need of medical cannabis. We believe strongly that visual storytelling is the most powerful way to connect with an audience. Our families featured in this exhibition want you to know that they have tried everything else, and this is their last hope.

For more information please go to: http://www.takingfocus.org/tfblog/sponsorexhibitionoma

We are a 501c3 organization. All donations are tax deductible.


SPONSOR Exhibition at the Orlando Museum of Art

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

BECOME A SPONSOR


Charlotte's Tangled Web
Each image will be 30x40 in size
Image sponsorship's are:
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You may donate any amount to be listed as a general sponsor

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Opening  June 11, 2015 / Orlando Museum of Art


Dear friends and supporters,
 
As many of you were great supporters of Love for Alyssa in 2012, we hope you will stay with us on our next great journey. We are pleased to announce that Love for Alyssa, Keep the Light On, and images from my new work in progress, Charlotte's Tangled Web, have been invited to be a part of the Orlando Museum of Art's Florida Artist Prize In Contemporary Art this summer.
 
Charlotte's Tangled Web focuses on those in need of medical marijuana in the state of Florida. Understanding how controversial this subject is, I set out to gather my own findings. It didn't take long to discover how tangled the issues are, on so many levels. At the bottom of this mess are those that are truly suffering. I would call these individuals 'victims'. They are of all ages, with all different types of debilitating aliments, who have become 'victims' in an inhumane game of tug-of-war between politics and money. Their lives have been left hanging in the balance while those in power decide their fate.

I have witnessed first hand the positive impact this plant can have. Ten year old Christina Clark went 100 days seizure free utilizing cannabis oil.
 
To reflect on what a great impact Love for Alyssa had, the work has been featured on CNN Photos, CNN America, CNN Chart, as well as the Daytona News Journal, The Observer, and F-Stop.  Furthermore, LFA was selected as a finalist in the Michael P. Smith Fund, and selected as one of the Critical Mass 50 of 2012.
 
The most humbling impact has been the emails received from people around the country who were moved by Alyssa's story, as well as the handful of students around the county who learned of the work and included LFA as part of their graduating thesis. Love for Alyssa unknowingly achieved so much more then was ever intended, thanks to the power of photography and you- our supporters.

We hope that you will help us continue to advocate, educate, and inspire others. Please consider helping us continue making our imprint in the world.

    

Sincerely,

 
Jennifer Kaczmarek / Founder

 

Christina Part II - Charlotte's Tangled Web

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

 

Going back to where we last left off…

With Christina's neurologist last words playing in Anneliese's mind, "Do you believe in God, because you have tried everything that conventional medicine can do, maybe it's just time to believe in God." Anneliese was feeling lost. She began posting to facebook what she was told, and that is when friends began sending her links to articles about children who were successfully being treated with cannabis.

 Soon after, her children were watching Discovery Channel's "Weed Wars" and called her in to see a father who was administering his epileptic son with cannabis. "I was floored!" Anneliese said.

 Right away Anneliese started researching to see how she could obtain the high CBD, low THC compound for her daughter. "I called Colorado to find out that there was a year waiting list, so I started looking for people who could get it for me," she says.

 Five days after Christina tried this new medical approach for the first time the seizures stopped. 10 days later she was sitting up, 20 days later she was eating, 30 days later she was trying to scoot around and walk. "She did have a couple seizures at the 30 day mark, and then we changed things around a little, and she made it to 60 days with only 1 seizure," Anneleise says.  "Her developmental gains were astounding; she was playing with toys we hadn't seen her play with before. She was very alert. She was engaging and interacting with us. It was wonderful! Then I ran out, and I didn't want to put those that were helping us a risk by asking them to send more, so we just stopped."

 "It was around this time that we learned of Medical Necessity in the state of FL. Christina's doctor wrote a defense in advance in case anyone would harass us," Anneliese said.  "We hired a lawyer that helps to set up an affirmative, but marijuana in FL is not the same."

Anneliese and Christina in Christina's room. Jacksonville, FL.

 "So, it's been a struggle since April, and all the seizures are back", Anneleise says.

 Anneliese goes on to say, "I called the Realm of Caring and they suggested several support groups. I never spoke; I just observed. On facebook   I saw a post that Steve DeAngelo from Harborside Health Center was going to be in Orlando." Harborside is the California medical cannabis dispensary and wellness center that has been featured on "Weed Wars.

Christina's scar where her pins, screws, and plates were implanted due to having dislocated her hip.

 "Also, at that time, there were three mothers who coined their name as 'Cannamoms.' I met them, and I was asked to go on stage with them to talk about Christina,"  Annelise says.

 "Afterwards, Steve said with up most empathy, that he wanted to help. Anneliese added.

Photo courtesy of Anneliese Clark. The medical cannabis oil that was donated to Christina. As of January 13th, Christina has been 45 days seizure free.

 In October  the four moms and their kids were off to California on a clinical trial for two weeks.  Harborside sponsored their hotel and transportation expenses once they arrived.

Some of Harborside's vendors donated oils to the families.  Medmen, Care by Design, and the Cannadream Foundation also contributed their expertise.  "It was an amazing and humbling experience" Anneliese said.

When we first met, Anneliese and Christina had just come back from California. As of yesterday, I am thrilled to report that since having been back and using the cannabis oil daily, Christina has now been 45 days seizure free, and has gained 8 pounds since October. How amazing is that news!

Anneliese posted on facebook yesterday a video of Christina drinking out of a sippy cup stating, "Christy is now drinking for the first time in 9 months." Christina still is in need of a feeding tube, but her mom goes on to say that even though Christina started eating again 4 weeks ago, she still hadn't been able to drink regularly on her own.

On January 23rd, Christina will undergo surgery to have the pins, screws, and plates in her hips removed that were in-placed last April due to subluxation. When Christina was on medical cannabis the first time, she was so excited, trying to do too much, too fast. Unfortunately her body wasn't ready to handle so much motion causing her to dislocate her hip.

As of January 9th, the official fight for the next two years began for all in need of medical cannabis in the state of Florida.  The Secretary of State announced it will be back on the ballot in 2016.

Please stay tune and continue to follow Charlotte's Tangled Web. Our journey is just beginning. Education is key for all of us.

Thank you,

Jennifer Kaczmarek

 

Christina Clark- "Charlotte's Tangled Web"

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Christina Clark sitting in the family room of her home. Jacksonville, FL

Before I begin, I would like to share some thoughts I was having on the way home. Driving alone is peaceful for me, and it's when I tend to do a lot of reflecting. So many things were going through my mind as I just left this sweet, innocent little girl. The name I gave this project, "Charlotte's Tangled Web" is even more fitting every time I leave someone, because I realize what an even bigger tangled mess it actually is.

Just another rude awakening about how much politics and money rule the world. Does anyone in our ruling government have any true empathy for those that are suffering? If they did, would they be treating them like puppets on a string, literally playing with their lives like they are?

Then there is the public, and the stigma attached to the word marijuana that is held by so many; stubborn, set in their ways with old school mentality, refusing to take a moment to listen to the other side and educate themselves. I, myself, really didn't know anything before, but I knew this was on the table, and I wanted to know more. I'd heard stories of cannabis helping children, and that interested me because I can't stand to hear of children suffering. I'm sharing with you what I'm learning, what my eyes have been opened to. The benefits of what cannabis has not only done for children, but for those of all ages, with all types of afflictions. You have to get in and dig a little if you want to know the truth about things. I'm learning and witnessing the true benefits of cannabis thanks to those who have opened their doors to me. Thank God for Taking Focus, where I have a platform to be free. My goal is just to do good, to do the right thing, and share what I learn with you.

Christina cuddles with Angie, her caregiver, and her dog Bella. Jacksonville, FL

 

Christina

 On Thursday, October 30th, I drove near the border of Jacksonville to meet 10 year old Christina and her mom, Anneliese, for the first time. In 10 short years, Christina has endured more than most will ever in a lifetime. I was there for a few minutes speaking to Anneliese when she then said, "Christina is over there." I hadn't heard a child's voice and was surprised to learn she was just near by sitting on the other side of the couch, but what I soon discovered was that she could not speak.

 Christina was diagnosed with epilepsy at 3 months old when she started seizing in her sleep. By the time she was 6 months old she was on 4 medications, 2 of which were for adults. Barely able to hold her head up, they removed 2 medications, and she went 4 months with no seizures. She began babbling, laughing, hugging and kissing, though she couldn't crawl. This began the cycle of her life.

 In the first nine years of Christina's life: 

  • experimented with 16 different AED's - totaling 1000 listed side effects
  • seizure types -tonic-clonic, myoclonic, infantile spasms, gelastic, complex partial
  • 3 diets
  • Stimulator Vagus Nerve was implanted - a device designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. The device is much like a pacemaker.
  • 6 neurologists
  • 3 countries for stem cells
  • 3 brain surgeries
  • Feeding tube
  • Hip surgery
  • 20 hospitalizations
  • Relearn to crawl and walk 5 times
  • Last neuro visit- suggested they turn to God
  • Became a Cannabis Patient

By the time Christina was 11 months old, she started having 110 seizures a day, and was put on a steroid that causes the face to swell, usually referred to as "Moonface". At 15 months old she started the ketogenic diet and went from 110 seizures a day to just 10. Within 4 weeks she began developing again, and was able to crawl, pull up and walk, though until this day, the babbling has never come back.

After some time the diet no longer worked, and seizures took on a new form called tonic-clonic which started a whole new pattern of more meds, more seizures, and more diets.

At age 4, the Stimulator Vagus Nerve was implanted. Annelise said, "It worked only so-so for her."

When she was 5 they decided to go to Germany for stem cell research. They also traveled to Mexico and spend a month in China which Anneliese says was fantastic. "She was doing really well there, but you have to go back every 6 months. The more severe you are the more often you have to undergo the treatment, and we couldn't afford to keep going back."

Anneliese fixing Christina's food that she receives once a day. Her meal will last her 24 hours. Jacksonville, FL.

Anneliese fixing Christina's food that she receives once a day. Her meal will last her 24 hours. Jacksonville, FL.

Anneliese attaches CHristina's feeding tube. Jacksonville, FL.

Anneliese attaches CHristina's feeding tube. Jacksonville, FL.

At age 7, their neuro team suggested brain surgery. Anneliese says, "It didn't stop the seizures, but it did cause them all to go to one side of her brain, which was a success in the respect that the other side of her brain immediately started to develop again. Doctors were able to see metabolic development, so they performed another surgery to try and get all of the parts that were seizing. Unfortunately they didn't get them all. Three days post-op, she started seizing again, and at that point they realized what part they had missed."

Annaliese said, "This was 2012. The brain surgery program was new at FL Hospital in Orlando. They went back in to get what they had missed, and she started to seize again from both sides. Meaning they had spread from the bad side to the good side.  In hind sight, we should have stopped."

"Thy preformed a radical type of surgery, a functional hemispherectomy on the bad side, and what is called an MST on the good side. Now we know you can't operate on both sides of the brain at the same time. She seized the day she came out of surgery."

Note: Hemispherectomy involves disconnecting one side of the brain (that is, one cerebral hemisphere) from the rest of the brain. This involves cutting the connections from one hemisphere to the rest of the brain in order that seizures arising in that hemisphere have nowhere to go.

 In Multiple Subpial Transection brain seizures may begin in a vital area of the brain such in areas that control movement, feeling, language, and memory. MST stops the seizure impulses by cutting nerve fibers in the outer layers of the brain (gray matter), sparing the vital functions concentrated in the deeper layers of brain tissue (white matter).

 Her mom says that her recovery was really slow following the surgery. They were able to get her to scoot around the floor, but she lost complete use of her left arm, and her left leg is very weak. These are known side effects from this type of surgery.

Anneliese goes on to say, "If we stood her up, she would start to walk around, but she was still having seizures. Last year we went back to the doctor to see what else we could do to get rid of the seizures, and we tried more medication. Within three weeks, that one med caused her to stop eating, drinking, and walking."

"We tried the ketogenic diet again but something strange was happening. She became like a wind-up doll. She would start to eat and then slump right over. Tests could not pin point the cause. Tests only showed it was not seizures causing the behavior.  She went down hill very quickly at that point, and she stopped peeing and pooping. Last November a feeding tube was put in."

Our neurologist then said to us, "Do you believe in God, because you have tried everything conventional medicine can do for you. Maybe it's time to believe in God."

To be continued….

 

Introducing Christina to Medical Marijuana - Part II

Anneliese Clark gives her daughter Christina one dose of medical cannabis concentrate infused with coconut oil,  by spraying two times into her mouth. Jacksonville, FL

 

Roby Baird- "Charlotte's Tangled Web"

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Roby Baird at home. Image shows the scar from Roby's brain surgery where he had 17 staples. Saint Augustine, FL.

Roby Baird at home. Image shows the scar from Roby's brain surgery where he had 17 staples. Saint Augustine, FL.

"On March 7, I woke up that day planning to go surfing with some friends, but our plans fell through.  So, I'd decided to head over to Wal-Mart to pick up a few things I needed, and on my way there I swung by my kids' place just to say hi to them."

Roby pulled into the Wal-Mart parking lot, finding a space for his car. He said within seconds alarming events started to spiral. Roby describes a flood of memories began rapidly escaping his mind, as a horrible pounding pain in his head followed.

"The last moments I remember were my fingers and toes going numb, and the numbness going up my legs as if going into paralysis, and continuing up my body through my arms."

He opened the door wanting to get out and stand up, but he started to black out as a seizure ensued. He fell out of the car onto his face, hitting the pavement.

He is unsure how long he was there until he was found.  Coincidentally, it was a couple who attended Roby's cousin's church in Palatka, FL. who had found him.

Paramedics rushed him to Flagler Hospital in Saint Augustine, FL. A CAT scan discovered that he had an abnormality in his brain. An MRI showed a tumor.

Doctors immediately started him on several seizure medications.

On April 16th, Roby had a biopsy done at Flagler Hospital in Saint Augustine. Seven pieces were removed from his brain. Five of those pieces were sent to the Mayo Clinic in Rochester, Minnesota, and the other two were sent to Shands Hospital in Gainesville, FL.

April 22, Roby went to Shands Hospital in Gainesville and was told of the seriousness of the location of the tumor. Roby's tumor was sitting in a delicate place. Doctors needed to figure out how best to remove the tumor without permanently effecting his memory and speech. Roby's doctors ordered another MRI on May 7th, in order to decide how best to remove the tumor without doing permanent damage.

Deanna Baird, Kylee Baird, and Roby Baird singing at River Oaks Community Church at R.B. Hunt Elementary School. Saint Augustine, FL.

Deanna Baird, Kylee Baird, and Roby Baird singing at River Oaks Community Church at R.B. Hunt Elementary School. Saint Augustine, FL.

On the night of May 8th, Roby was restless lying in bed unable to sleep, partially due to the medication and partially due to his uneasiness and worry of what this new MRI was going to reveal. Emotionally Roby goes on to say that as he lay in bed, it was the first time he had ever heard God's voice. God told him not to worry and that everything would be ok. He was told the tumor had moved, and that He would be there for him.

Roby considers himself a born again Christian. He says his "faith in the Lord" is very strong and is what wills him each day.

On May 9th, his doctor personally called to tell him amazing news which they discovered from his latest MRI. His doctor called to say, "You are not going to believe this, but the tumor has moved."

Roby said that the news was the confirmation he needed; a reassurance to what he had been told the night before. "What happened did happen. I did hear God's voice!"

The MRI showed that the tumor had shifted a bit, making it easier for doctors to remove it.

May 14th was the day of Roby's brain surgery. It was very successful although the tentacles that were attached still remained. This news meant that Roby's memory and speech would not be affected.

 

Kylee Baird and Roby Baird during worship at River Oaks Community Church in R.B> Hunt Elementary Church. Saint Augustine, FL.

Kylee Baird and Roby Baird during worship at River Oaks Community Church in R.B> Hunt Elementary Church. Saint Augustine, FL.

Seeing the Benefits of Cannabis First Hand

Roby disclosed to me how he has seen the benefits of cannabis first hand. The events began in 2002 when they discovered that his former wife had a lump on her neck while pregnant with their son Garrison. It was tested, and no form of cancer was found. After Garrison was born, it went away.

In 2004 his wife became pregnant with their 5th child; the lumps suddenly started popping up all over her neck. She was sent to Shands in Gainesville and was diagnosed with stage IV Hopkins Lymphoma.

She began chemo and radiation right away. The pain was so sever that doctor's prescribed her Oxycodone, but Roby said that when she would take the medication, it would knock her out for 6 or 7 hours. "She couldn't eat a thing; she was just wasting away. She couldn't even swallow her own spit." Roby said.

A friend then suggested marijuana. "At first I was so against the idea. I just thought like many, that it was just a drug that people abused, but my friend suggested I speak to a girl with whom we had gone to high school that was living and working for a doctor in California. I gave her a call, and we spoke for a couple of hours."

"Next thing I did was purchase a vaporizer and illegally bought marijuana. At that point, I didn't care. I was just trying to save my wife's life."

"Within 20 minutes of in-taking, she asked for a glass of water and drank the whole thing. Right then I was amazed."

Doctors had previously told them if she wasn't able to consume food soon, they would have to feed her through a tube because she was losing weight so fast and unable to eat.

"Thanks to the marijuana, she was able to eat and gain weight."  Roby says that he never mentioned the marijuana to the doctors because he didn't know how they would react. But, he knew what was saving his wife.

Roby went on to say that when her life got back to normal she stopped using the drug. She only used it during that most difficult time, and used it only for what it was intended to be used for.

Roby wishes, that he too, had done the same after his surgery. His surgery left him with horrible head pain. He felt his mind was void for weeks after.

With the Astrocytoma that is left in his brain doctors are just going to continue to keep watch. If those tentacles were to be removed it would affect his memory and speech for life.

"I think that marijuana is one of the most amazing tools against cancer on the planet. With the right CBD and THC combination, it will cause the apoptosis, the cellular death."

"If all they allow in Florida is the oil, then I am cool with that because that is all I want to use. It kills cancer better; it's more effective. I've done so much research and reading on this subject that I know what I need."

"It's a plant. The medical industry hates it- the pharmaceuticals companies despise it, because it's all about the money. They've done just the pill form of THC, but you need the CBD. The two have to work together in symmetry.  You have to let it work together the way God created it."

Roby says that he does not look at this experience in a negative way, but that it has only drawn him closer to his faith and people. He believes God has a purpose for him."It's been a great tool", he goes on to say, "I've been able share my experiences with all the people that I have met since this has happened to me. I've been able to meet people who have been through the same thing or going through it now. It has been a gift from God. "

Roby Baird seen here photographed outside with four of his five children: Garrison Baird, Deanna Baird, Kylee Baird, and Jasmine Baird. River Oaks Community Church at R.B. Hunt Elementary School, Saint Augustine, FL.

Roby Baird seen here photographed outside with four of his five children: Garrison Baird, Deanna Baird, Kylee Baird, and Jasmine Baird. River Oaks Community Church at R.B. Hunt Elementary School, Saint Augustine, FL.




Medical Marijuana / FL - Basic Questions & Answers

1. Now that Charlotte's Web has been passed in the state of Florida, can you smoke it?

    No. Charlotte's Web will be available in oil form only. It will only be used by epileptics, and those suffering from brain trauma causing seizures.

 

2. When will Charlotte's Web be available?

     Said to be January, but really it is unknown.

 

3.  If Charlotte's Web has already been passed then what does the vote on November 4th regarding Amendment 2 encompass?

      It will permit the medicinal use of all other strains of the plant, for all other types of afflictions   when deemed appropriate by a medical professional. Some of those afflictions said to benefit are those with; cancer, HIV/AIDS, Glaucoma, Multiple Sclerosis, Arthritis, Parkinson’s disease, Tourette’s syndrome, muscular spasticity, and may others.

 

4.  Will the vote November 4th regarding medical marijuana, legalize recreational use in the state of Florida?

      No.

 

5.  If passed, how will patients be able to intake?

     That is yet to be determined. Each state has set their own standards regarding how medical marijuana can be administered to the body.

 

 6.  What is Charlotte's Web?

      C.W. is a strain of cannabis that was created for medicinal use for it's high CBD, low THC content. The THC in C.W. is .5%

 

7.  What is CBD, and what are the benefits?

CBD (Cannadidiol), is one of over 85 active compounds found in cannabis (phytocannabinoids) are all active Chen compounds found in cannabis.

According to some research scientists, CBD causes apoptosis which is cellular death of cancer cells. CBD works best though when in conjunction with THC (Tetrahydrocannabinol) 

 

8.  Does Charlotte's Web make you high?

     No. The THC level is too low to have that effect.

 

Weed & Weed 2 CNN Documentaries with Dr. Sanjay Gupta

Sharing two educational pieces. CNN's documentary with Dr. Sanjay Gupta. Weed features Charlotte Figi, the little girl that Charlotte's Web is named after. Charlotte was born with Dravet Syndrome, the same condition that Bruno was was born with.

Weed 2 is CNN's second documentary with Dr. Sanjay Gupta. If you pay close attention you will see Dr. Gupta speaking with Jacel as he holds Bruno.

TF Asking For Immediate Assistance

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Taking Focus is asking for your immediate assistance.  Bruno Stillo is now off of the waiting list and on his way to Colorado today to receive Charlotte's Web. Jacel has great hopes that Charlotte's Web will have a positive impact on Bruno. Jacel is in need of financial assistance. She is unsure of how she will be able to manage.

Last year when Jacel left for Colorado to get Bruno on the waiting list, she befriended someone that has welcomed her and Bruno into their home for the week.

Jacel and Bruno are in need of gas, food, and the yet-to-be determined cost of Charlotte's Web. Funds are also in needed for future trips back to Colorado.

Bruno having a seizure. B & V Thera-Pro Associates, Miami, FL

Bruno having a seizure. B & V Thera-Pro Associates, Miami, FL

Back in January, at the time of the CNN interview, Bruno would have up to 300 seizures.  At this time Bruno has over 300 seizures a day.  Bruno was recently diagnosed with induced Lupus caused by one of the seizure medications he was prescribed. He has now been taken off of Depakote, but only time will tell if that medication was the cause. Withdraw from the medication has increased the amount of seizures he is having.

Bruno's condition has left him unable to walk on his own and unable to talk. It is yet- to- be determined if he has suffered permanent damage to his brain due to the extensive amount of seizures.

After having tried everything possible, last year doctors decided to try Potassium Bromide- a veterinary drug.

Here is a list of the medications Bruno is on:

Depakote- for partial seizures (just stopped taking due to being recently diagnosed with induced Lupus)

Keppra- antiepileptic drug

Potassium Bromide- antiepileptic medication for dogs

Levocarnitine- treats low blood levels of carnitine to help protect the liver.

Clonazepam- (for clusters of seizures)

Diastat (for seizures lasting over 3 min)


Bruno always smiling. B & V  Thera-Pro Associates, Miami, FL

Bruno always smiling. B & V  Thera-Pro Associates, Miami, FL

As a parent wouldn't you do anything to save your child?

After having tried all medications, this is the last option for Bruno and many others.

According to Jacel, "My son is still having hundreds of seizures in a day. He can't eat a meal, or play with a toy without a seizure interrupting. He has tried all other cocktails of seizure meds, has tried ketogenic diet. Bruno is now 3 years old and has never experienced a day without a seizure.

Medical marijuana does not cause the horrific side effects that the FDA approved drugs have caused. Why should he experience horrible side effects such as drug induced lupus, being lethargic, regression, low white cell count, and recurrent thrush. Due to the fact that he is non verbal, how would I even know about that he is feeling dizziness or having suicidal thoughts, etc.  Other patients experience all this too."

I personally have seen how medical marijuana is helping other patients. Why shouldn't my son have a chance too! Why should a politician be the person to decide what is best for my child and other children that are suffering, it should be my choice not a politician who's never seen the hundreds of seizures my son experiences in a day! Seizures in Dravet syndrome could last for hours. A seizure can take him away in minutes. I shouldn't have to wait. It's a little life I'm trying to save. It's my son's life at risk!"

Jacel hugging her son Bruno at home. Miami, FL

Jacel hugging her son Bruno at home. Miami, FL

What you need to understand in regards to Amendment 2.

According to Jacel, "The whole plant is needed. So many different parts of the plant can treat so many illnesses. Studies in patients given high CBD, low THC have shown to help with seizures, but the ratio is different for every patient which is why the whole plant is needed. You can't restrict a patient on using only one dose when not all patients are the same."

All of this means that the genetic makeup of each person is different. The ratio becomes different for each individual. Amendment 2 is vital.

Bruno laying on his and Jacel's bed at home in Miami, FL

Bruno laying on his and Jacel's bed at home in Miami, FL

Please consider donating at this time. We can make a difference together!


Thank you,

Our Taking Focus Team


Why I Started This Project

Charlotte's Tangled Web

 

The state of Florida at this moment sits at the forefront of a major decision that could impact thousands of lives. With Charlotte's Web now signed into law, the important vote hangs in the balance when the public votes on Constitutional Amendment 2 come November 4th, 2014. Charlotte’s Web, also known as the “Compassionate Medical Cannabis Act of 2014”, has a limit on cancer and epileptic candidates. When it was legalized, it created a huge dichotomy between its one strain of medical cannabis of low THC, high CBD, and that of the all encompassing Amendment 2. This would permit all strains of medical marijuana to be available for those on a wider range of afflictions who have been deemed in need by the evaluation of their licensed medical physician. This complex and very controversial matter comes with a question: What should be the level of care that exists for a patient in need of medical marijuana?

If your wondering how this project came about, it happened like this:

My partner Jason Greene suggested in one of our meetings I look into Charlotte's Web, being it may be a topic I would be interested in due to it's heavy debate in Florida right now. I recalled a little girl in a documentary that I had seen some time ago on CNN called, "Weed", commentated by Dr. Sanjay Gupta. I forgot that that the child in the documentary was actually Charlotte Figi, the then five year old little girl that Charlotte's Web was named after.

Researching I stumbled upon a CNN interview with single mother of two, Jacel Delgadillo. In the interview she was speaking of her deep desire for her son Bruno to try medical marijuana. Charlotte Figi suffers from Dravet syndrome, the same condition that Jacel's three year old, Bruno Stillo suffers from.

This subject understandably comes with many preconceived notions. I hope you will take this journey with me. My goal is to bring awareness. My hope is to educate the public.

 "If you can't explain it simply, then you don't understand it well enough."

-Albert Einstein

 

Here is the CNN interview where I discovered Bruno's story:




"Charlotte's Tangled Web"

Bruno having therapy at B&V Thera-Pro Associates, Corp., Miami, FL

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Meet Bruno; he is three years old. Bruno's first seizure was at three months old. He suffers from Dravet syndrome, a chronic form of Epilepsy.  Bruno's seizures now exceed beyond 300+ a day.

More to come...

Coming Into Our Own

Testing Project 1

It's been a while since we have last posted, but our TF Team is in full force. We have been working on things to come; fiscal sponsorships, interviews, website makeover (still in process), while quietly assisting our current projects (families). On the horizon for us is the basis of what Taking Focus was created to do, and that is to assist other important social issue projects out into the world. Our main mission remains, creating change by impacting the human spirit.

By all means, spread the word to other photographers that are looking for a way to manifest their projects into reality. If you are a photographer who is trying to make a difference through your work, then let's start the conversation. (contact page)

I am currently in the beginning stages of two projects. I am not sure when I will discuss them, but just announcing it out into the "internet world" that I've got them, pushes me.

Shown here is an image taken in the studio on Thursday. I have to give great thanks to two special little people who let me test on them all day.

 

Check back with you all soon,

 

Jennifer Kaczmarek