Help Chris fight DMD- the disease kills his muscles!
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Hi, my name is Brygida ( Bridget). Together with Rafal Marcinek we are organising this fundraiser to support little boy, Chris (Krzys) Zawada. We are organising this fundraising on behalf of Anna Zawada, Chris's mom and our dear friend.
Chris has been diagnosed with Duchenne Muscular Dystrophy (DMD).
It's a genetic disorder characterized by progressive muscle degeneration. It is a multi-systemic condition, affecting many parts of the body: skeletal, heart and lungs muscle.
Chris was born as a healthy boy, which was proved by a newborn physical examination.
Unfortunately, his first health issues started when he turned 7 months. He stopped reaching developmental milestones- he didn't lift his head and lay still in his crib, rarely moving his arms and legs. The parents decided to follow their intuition and have Chris undergo a genetic test. The test result was shocking- diagnosis of Duchenne Muscular Dystrophy.
This rare genetic disorder affects one in three thousand boys, and Chris is in the minority.
Usually, the disease is characterized by damage to one or two exons and Chris has 16 damaged exons!
Muscles help us move, walk, hold, eat, talk, breathe and smile...Everyone wants to keep them strong and efficient. When they get weak, despite your hard work, a real drama begins. You start to lose another skill. You can no longer move, swallow and breathe.
From now on your life depends on a wheelchair, ventilator and G-tube.
Only steroids keep Chris alive. Every night, he wakes up screaming due to the cramps in his legs. Chris also suffers from heart disease. Every minor infection results in pneumonia because of the lack of cooperation between the muscles and his inability to cough.
The steroids have also caused a delay in his growth.
He's so little, he is only 4 years old and yet he has to suffer so much!
Chris's mom, Anna, is a single mother. Her daughter, Alicia, is 8 years old. She is very worried about her little brother's illness. Her dream is to collect the money quickly so then she could spend more time with her mom. Unfortunately the time that Anna devote to ill Chris takes her away from Alicia.
To help little Chris we need a lot of kind hearted people. Chris is living in Poland, we need international help to give him a chance for gene therapy.
With your support we can offer Chris a better life.
We are asking you for your donations for gene therapy in the U.S.A. , which can only be administrated to 4-5 year old children.
Your support will help cover gene therapy, necessary accommodation and flights.
Please, help save Chris from deadly disease.
Any donations are appreciate and sharing this post is also helpful.
Thank you for taking the time to read this post.
" Those who are happiest are those who do the most for others"
Organizer
Brygida Budysz-Marcinek
Organizer