arthrogryposis

Joseph Parthemore - Update

Joseph at Wolfson Children's Hospital  (Image courtesy of the Parthemore family)

On Christmas Eve our Joseph Parthemore contracted pneumonia causing both of his lungs to collapse.  He was transported to Wolfson Children's Hospital in Jacksonville, FL.  Doctors discovered he developed respiratory syncytial virus (RSV), a certain characteristic of pneumonia.  Since arriving to Wolfson's he has been heavily sedated and on a respirator.

On December 27th, thankfully, an X-ray showed improvement in his left lung.

As of today, Joseph remains sedated with the breathing tube until the infection passes and he can once again breath on his own.   This is a very difficult time for his family, as Joseph's dad, Dan Parthemore said, "He does not wake up, so I'm not sure if he knows I am there. "

The little guy has missed Christmas, and his 3rd birthday is this Friday, January the 4th.  Please keep Joseph and his family in your thoughts and prayers.

(We are postponing our fundraising walk sponsored by Flagler Beach Montessori that was to be scheduled for the end of January until Joseph is better.)


To keep everyone informed of our progress, the latest update about our transition is that we will be launching our new website along with our  organization's new name within the next three weeks, so please be on the lookout!  Sorry for the wait.

2012 has been a very humbling and inspiring year with many accomplishments and we look  forward to making many more in 2013!

A little note about Alyssa, in Fall of this year she joined a cheerleading squad for children with disabilities.  Her stepmother, Amy Hagstrom says she just loves it.

Another note, I had mentioned a few months back that Love for Alyssa was among one of the 200 finalists up for one of the 50 prestigious spots for Critical Mass 2012.  I am thrilled to say that Love for Alyssa made the 50!  Here is a link to the 50 Critical Mass winners of 2012.  http://www.photolucida.org/cm_winners.php

Also, please have a look at Love for Alyssa on Photo Philanthropy.  This is a wonderful organization that helps photographers connect with other non profits and showcases the work photographers have done for different organizations.  http://photophilanthropy.org/gallery-posts/love-for-alyssa-i-am-beautiful-in-every-way/(Please feel free to facebook like and share with others!)

Lastly, please have a look at fotovisura. This is a great outlet that supports photography; allowing photographers to share all sorts of different projects with the rest of the photo community. http://www.fotovisura.com/user/jennifer6/view/love-for-alyssa(Please feel free to facebook like and share with others!)

HAPPY NEW YEAR!

3 Million Dollar Baby + News

Please share this video of 2-year-old Joseph Parthemore with others.  We believe social media is an important outlet to funnel such important messages. Many thanks to documentary photographer and filmmaker Jason Greene for creating this video. Thank you so much for your friendship and sharing your talent. RECENT NEWS- we are happy to say that we are now a 501c3 tax-deductible organization!

If you would like to make a donation you may do so here - DONATION

If you missed our CNN feature, the links are down below.

Thank you and please share with others.

Introduction To Alyssa

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Thought I should share with you the first time my camera clicked this beautiful face.  I had stopped by her classroom the day before just to meet her without my camera.  All the children were napping when I came in, though Alyssa was wide awake.  I went over and whispered, "How nice it is to meet you!" I immediately got what others had said, because she certainly 'had me' from the first hello.

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The following morning I came in and there she was laying on the floor about to play with a container of "my little ponies."  This was my 2nd frame.

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Alyssa Jadyn Hagstrom was born February 14th, 2004, at Ormond Beach Memorial Hospital, in Ormond Beach, FL.  At birth she was diagnosed with a condition called  Arthrogryposis.  When she was delivered her legs, arms, and wrists were in a stiff, bent, inward position that would not allow for movement. 

At two days old, all her limbs and wrists were stretched as far as possible to aim towards a more normal position; including cutting the right hamstring, for casts to set into place. 

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Within her first year of life, she had two major surgeries.  Alyssa's feet were  extremely clubbed. They were stuck in a position like a ballerina dancing in her toe shoes.  In order to gain a chance of normalcy, her Achilles tendons were cut on both feet.  Her left foot sustained even more extreme measures because of the crooked position it was in.  Surgeons had to remove her foot at the ankle bone by conducting what they call a "bone rotation,"  by cutting the bone in two places to twist and reattach into place.  Visibly seen metal rods held her foot together for six months.

This act of stretching her limbs into position to be placed in casts had to be repeated.  Her condition causes all of her joints to be contracted, causing her never to be able to have the muscle to control them. 

Today Alyssa has no use of her legs, arms, and limited use of her fingers.  This summer she may be  undergoing surgery for an elbow release.  This possibility would give her a bit of much-needed independence. Her arm would then be able to rest on the table, and she could bend down to reach towards her fork or spoon to eat.

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This is an earlier photo as well, taken back when she was receiving therapy, but at this time she is not. 

 I am very thankful to Duane for letting me into their life in such an intimate way.  I've been able to capture some beautiful images along this journey.   I am very proud of this work.  The possibilities the impact of this project could have on her life is a very overwhelming thought.

I've gone to the extent of creating this corporation to follow through with what I believe is possible.  Alyssa has no idea what she has done for me.  In her short life she has been through many disappointments and her spirit has never darkened.  She is worth fighting for. 

 I believe in the good of people.  The idea of Love For Alyssa is to create a 'movement'; for people to be inspired by the process of what coming together can create.  The art of photography is the center piece in which allows us to connect.  

This change will have a significant impact on her future.  Please come be a part of something so wonderful.

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