compassion

Bruno: Dravet Syndrome

{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}

Dravet Syndrome is a rare genetic epileptic encephalopathy(dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI) or severe myoclonic epilepsy in infancy (SMEI). The disease begins in infancy but is lifelong.  (via the Epilepsy Foundation, read on for more information)

February 8, 2016 - This visit with Bruno took an unexpected turn, and this experience shed even more light into the unpredictable life that Jacel and Bruno lead. I know that there are hundreds, if not thousands of other families that can relate to their story. The numbers are baffling and the stories are heartbreaking;  there are so many suffering day in and day out from debilitating illnesses. In the past week alone I personally know of three children that have ended up in ICU.  These families live in fear not knowing what each day will be like for their child.

I met Jacel over at B & V Thera-Pro Associates, in Miami, FL., where Bruno receives therapy. This is his home away from home you could say. He has three different types of therapies, each for one hour, three times a week.

It's wonderful to see this smile on his face. Remember, this is a little guy who is four years old and can not speak. Every tiny task he manages is seen as overwhelming success. He is pictured here in his new chair/stand that he has recently received, it enables him to be in a standing position without assistance.

When Bruno was finished with therapy, Jacel took him to get his hair trimmed. Bruno left with a nice little fade on his head. We decided next time he should have a couple thin lines shaved on the side. He would look really cute with that.

I had a little scary moment after we went to grab something to eat. Jacel needed to run into a store, and I waited in the car with Bruno.  I was sitting talking to him and shooting pictures with my phone, when all of a sudden he started seizing. I can say that an overwhelming rush of panic went through my body. While I have seen him seize many times, I have never been alone with him when it has happened. I wasn't sure what to do. And, being unsure of how long Jacel might be, and not knowing how long the seizure would last, the moment was nerve racking. "What do I do? " I was envisioning myself picking him up and running to find her, but I wasn't sure exactly where she was. Just as I was about to get out of the car, I saw Jacel coming around the back of the car, and I thought, "Thank God!


February 9, 2016 - On this day, we met with Dr. Ian Miller at Miami Children's Hospital. He is Bruno's neurologist. This was to be just a routine visit for Bruno. Dr. Miller was just following up with Jacel on how Bruno was doing. Bruno has been fortunate to have been selected for a CBD trial being conducted at the hospital. I can only imagine how many other parents would wish to have their child be included in such a fantastic study such as this.

Jacel says, "He was on the blind study the first four months, some days were stable, and some days were hard. It was hard to tell." Meaning that she is not sure if he was receiving a placebo at the time, or if it was the actual CBD.

 

 

After the first four months of unknowing, he then began truly receiving CBD in September of 2015.

Note: When I first met Bruno in August of 2014, he was having over 300 seizures a day. Then he went to Colorado and California by November of 2014 and started on Jayden's Juice, Charlotte's Web, and other cannabis oil such as THC oil, to help hen big seizures were present. Bruno then had a sudden decrease in seizures, he was down to 50 a day. "During our use with cannabis we prevented the use of rescue drugs, as cannabis replaced them with little side effects compared to the rescue drugs used, such as Diazepam and Klonopin. Imagine if he was on CBD and THC combined legally here in the state of Florida where he would receive the correct dosage of THC oil that he needs instead of harmful pharmaceutical recue drugs to treat his major seizures!"

In March of 2015, Bruno stopped cannabis all together, and was stable. Months later he started the trial.

 

 

After meeting with Dr. Miller, Bruno was to follow up on other tests.  We preceded on to having his routine blood work done. Unfortunately, it was something Jacel was going to have to go back to have done the following day because they were having difficulty getting enough blood drawn from him.

 

 

From here we moved on to our next location, Bruno was to have an EKG test. Once we got upstairs, Jacel and I noticed that Bruno started not to seem himself.  As you can see in this image, a change has now started to occur. He began having long dazes. He wasn't himself at all. Usually he's arms and legs are waving. He was completely still, and began to be unresponsive. You can see the concern on Jacel's face.

After Bruno's EKG we sat in the waiting room right outside for a little while to see if he would snap out of it. Bruno was feeling warm. This fever would soon come to be a sign of what was yet to come. Jacel began giving him some medication, but nothing changed. We decided it was best to go back to Dr. Miller.

 

Once we arrived to Dr. Miller's office, Bruno began having seizures. These seizures were different and not so noticeable to the eye as other seizures he has had, except for his hands, they were shaking as the seizures were happening. After trying a few emergency medications that seemed to have had no effect on him, Dr. Miller suggested we head to the emergency room. He notified them we were coming, and when we arrived another seizure insued. The nurse took Bruno from Jacel's arms into hers, and rushed with him down the hall, around the corner, into the trauma center.   

20160209_130537.jpg

Within seconds, there was one after another entering the room attending to Bruno. It was a pretty intense time, so I don't remember how many doctors and nurses were attending to him.  Never did I think that our day would have come to this.

But, this is a true indication of what life is like for the suffering and their families. They live never knowing what their day will bring. 

That night Bruno was submitted into the ICU. During the night his fever spiked and he had four seizures, bringing his oxygen level down to 1%.

 

This image represents all the children that are suffering.

Bruno was finally released from Miami Children's Hospital on Feburary 11, 2016.  What they discovered was that he had contracted Coronavirus, which can be equivalent to a common cold. The nonconvulsive seizures, and spiked fevers were all indications of the cold he had contracted. This goes to show how delicate the bodies are of these children. Can you imagine all of these things happening, and seeing your child turn blue and go to having 1% oxygen?

I would like to thank Dr. Miller and the entire staff that I met that day at Miami Children's Hospital. Everyone I encountered was so kind.

Please I encourage everyone seeing this to please share with your family and friends. Spread the word. The road the suffering and their families are trudging is beyond difficult.

I am committed to sharing these stories in hopes that hearts are being reached. People are not only suffering, they are dying; children are dying. These stories are more common than you would think. We can't sweep them under the carpet anymore. Everyone deserves the chance to try every option available that may be able to not only ease their suffering, but to save their life.

Educate, Advocate, have Empathy, Compassion, and Love.

#dotherightthing #fightthegoodfight #makingpicturesmatter

#WEEDthestoryofcharlottestangledweb

~ Jennifer Kaczmarek

 

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.