Wonderful life ahead!

Be a Hope for Ada – she diagnosed with Spinal Muscular Atrophy

0 146

Quoted

Dear Everyone,

I would like to dedicate this fundraiser to my Niece’s Daughter Ada Celik. Ada was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 when she was 4 weeks old. This is the most severe SMA. She is now 7.5 months old and needs to receive a genetic therapy treatment which is called Zolgensma in order to be able to breathe,to sit, to walk and to run.  ZOLGENSMA is the only approved prescription gene therapy used to treat children less than 2 years old with Spinal Muscular Atrophy (SMA) in the USA. ZOLGENSMA is given as a one-time infusion into the vein. This gene therapy costs $2.1 million (£1.7 million), plus with additional expenses included the price is as high as $2.4 million (£1.9 million). Therefore Ada has to go to the USA in order to get her treatment as soon as possible. Please read through Ada’s story below. Thank you very much for all your support and donations. We kindly appreciate all your help. 

Organizer Saniye Keelson

Please be a Hope for Ada…

Children are the most precious and important things for all parents in this world. We all want to create a family that is full of joy and love where we can be affectionate towards our children. When I found out that I was pregnant with my Daughter, we were so thrilled and happy. After waiting for 9 months, she was born on the 15th August 2019. We were so happy and excited to see her in good health. While we were thinking everything was fine, things changed after 4 weeks. Unfortunately she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 which is the most severe type of gene defects.

We live in Turkey and Spinraza is the only approved medicine here which is given to SMA patients. Ada has been given this medicine 4 times on monthly basis so far and since then she has been showing some improvement in her movements. Although this treatment is slowing down the progression of this rare disease, it is not the permanent cure of stopping it. However, there is a new HOPE for our Daughter and it’s called Zolgensma. ZOLGENSMA is the only approved prescription gene therapy used to treat children less than 2 years old with Spinal Muscular Atrophy (SMA) in the USA. ZOLGENSMA is given as a one-time infusion into the vein. This gene therapy costs $2.1 million (£1.7 million), plus with additional expenses included the price is as high as $2.4 million (£1.9 million). Therefore Ada must go to the USA in order to get her treatment as soon as possible.

We need your support and donation so as to see our precious Daughter Ada be able to breath, to sit, to walk and to run like all healthy children. If you could help Ada to survive this battle, we would be so happy and appreciate your kindness. Thank you so much each and every one of you for your donation…

-Esra & Kemal Celik-
Source – gofundme

Comments
Loading...