Help Yan-SMA Treatment With spinraza
Donation protected
My name is Madalena Aguiar, and I am here to share the history of my little nephew Yan.
There’s no other way to put it—my 6-months old nephew, YAN - is dying. His mon and dad lie by his side every night when he sleeps and their heart bleeds. It is impossible to hold the tears.
YAN could be your child. He is only 6 months old now. He loves playing with his toys, loves the hugs from his mon and dad, loves when they sing to him...
But at the age of 5 months old, he was diagnosed with SMA type 1, a rare genetic condition that robs normal children of everything. They end up losing all muscle movements till the point that they can not even swallow, neither breath on their own and death is inevitable.
It was during the bath that the mother, Marina, noticed something different in her son. "He always used to lift his neck when he was placed face down during the shower or even in the crib. At 3 and a half months, I realized that he was not doing this movement anymore and he already had difficulty breathing. I talked to his father William and we reported to the pediatrician. " After some tests, the baby was diagnosed with Spinal Muscular Atrophy (SMA), a degenerative disease of genetic origin that has three types I, II and III. Yan has the most serious type, the I, which has no cure.
BUT we were given hope. There is a new treatment with a medication called Spinraza-Nusinersen. This medication is only available in the USA and it can put a STOP on the SMA disease. It will stabilize it.
Unfortunately, the cost of this medication is very high. It is $ 1 million dollars for the first year of treatment.
So we have launched this campaign to raise $ 1 million dollars. This is our only hope to save YAN's life.
Parents of children that are receiving the medication now are ecstatic by the improvements they are seeing. Yan and children with his type of SMA disease deserve the same chance! They deserve to live.
HOW YOU CAN HELP TODAY
1) Please GIVE what you can. No donation is too small.
2) SHARE on social media (#SavingYAN) (#Help yan sma)
3) EMAIL this page - gofundme.com/45jflqw - to your family + friends. Together we are strong.
_____________________________________
YAN could live a long happy life and YOU can make the diference and make it happen.
TIME IS RUNNING OUT
Please, please help give YAN a second chance at life before it's too late. No words can describe watching YAN lose his moves and his ability to breath. Yan still have his smile and excitement for life. But we know this too will soon start to fade. We're racing against time and money is our only barrier.
There’s no other way to put it—my 6-months old nephew, YAN - is dying. His mon and dad lie by his side every night when he sleeps and their heart bleeds. It is impossible to hold the tears.
YAN could be your child. He is only 6 months old now. He loves playing with his toys, loves the hugs from his mon and dad, loves when they sing to him...
But at the age of 5 months old, he was diagnosed with SMA type 1, a rare genetic condition that robs normal children of everything. They end up losing all muscle movements till the point that they can not even swallow, neither breath on their own and death is inevitable.
It was during the bath that the mother, Marina, noticed something different in her son. "He always used to lift his neck when he was placed face down during the shower or even in the crib. At 3 and a half months, I realized that he was not doing this movement anymore and he already had difficulty breathing. I talked to his father William and we reported to the pediatrician. " After some tests, the baby was diagnosed with Spinal Muscular Atrophy (SMA), a degenerative disease of genetic origin that has three types I, II and III. Yan has the most serious type, the I, which has no cure.
BUT we were given hope. There is a new treatment with a medication called Spinraza-Nusinersen. This medication is only available in the USA and it can put a STOP on the SMA disease. It will stabilize it.
Unfortunately, the cost of this medication is very high. It is $ 1 million dollars for the first year of treatment.
So we have launched this campaign to raise $ 1 million dollars. This is our only hope to save YAN's life.
Parents of children that are receiving the medication now are ecstatic by the improvements they are seeing. Yan and children with his type of SMA disease deserve the same chance! They deserve to live.
HOW YOU CAN HELP TODAY
1) Please GIVE what you can. No donation is too small.
2) SHARE on social media (#SavingYAN) (#Help yan sma)
3) EMAIL this page - gofundme.com/45jflqw - to your family + friends. Together we are strong.
_____________________________________
YAN could live a long happy life and YOU can make the diference and make it happen.
TIME IS RUNNING OUT
Please, please help give YAN a second chance at life before it's too late. No words can describe watching YAN lose his moves and his ability to breath. Yan still have his smile and excitement for life. But we know this too will soon start to fade. We're racing against time and money is our only barrier.
Organizer
Madalena Aguiar
Organizer
Pembroke Pines, FL
