We are the Strango family from Satu-Mare, Romania, and Samuel is our little fighter. We built up the courage to ask for help and we thank our Lord that today is the day when we join this wonderful family.
Samuel is 4 years old and he uses all the strength he has to fight this terrible disease, Spinal Muscular Atrophy type I. When he was just 10 months old, Samuel had pneumonia and he went into cardiac arrest; ever since, he has been unable to breathe on his own and the doctors had no other choice but to install a breathing tube through his neck, called tracheostomy. It has been almost 3 years now that Samuel lives on this hospital bed and we, his parents, are by his side 24/7. It is with all our hearts that we wish to see Samuel get better one day.
Samuel is not eligible for Zolgensma but his doctors recommended a treatment that could help him breathe with more ease, so he doesn’t need to use the tracheostomy and he doesn’t need to be connected to all the devices that now help him breathe.
The treatment is called Evrysdi, it needs to be administered daily and the cost is huge: 250.000 euro/year. We dare to hope we will be able to raise the necessary funds, and it is from the bottom of our hearts that we wish to live a normal life.
We are young parents and we started our family life without ever imagining what was about to happen to us, but we now know that illness waits for no one, it can happen to anyone. Our life changed over night but we thank God Samuel is still with us and we thank God for this marvelous opportunity to raise the necessary funds for his treatment.
I hope from the bottom of my heart that you will love my little Samuel just like you have loved all the other children who joined this amazing community, and that you will help us raise the money we need for the treatment.