Let's Help Ramon be happy!
Donation protected
Hi everyone!
My name is Nayeli and I am Ramon Avinas sister.
My brothers custome bike was stolen this past thursday the 17th. This is not a regular bike, it was specifally desined and made to his size and weight since he has special needs. It took a while to get the doctors to aprove and for the funds to be raised to make this bike. Its not cheap nor easy to get all this done, and someone just took it. Ramon is 16 years old and was once a normal little boy who walked, ran, and even rode a bike just like everyone else. As he got older around the age of 7 my parents noticed more delays that were alarming. For years we thought it was Cerebral Palsy but doctors were never too sure, since he seemed to be getting worse. Just recently about 2 years ago we found out trough a very specific genetic test that he has PMD a very rare genetic disorder that unfortunately deteriorates the person and eventually kills them. There is no cure or treatments in the US that can stop it either. Only posible treatments are out of the country and very expensive as well since they are wil stem cells and not approved by US government. So now he is in a weelchair and has a lot of difficulty walking, controling movements and talking. But my parents will never give up. They did all needed to get the bike so that my brother had an escape, he could join his niece and nephew on bike rides and more important have movement and therapy with it. We want to get enough money get another bike , and with any extra help be able to donate to a charity that heleped raise the money before, the name is Variety Childrens Charity, and also hope to help family move to a safer and more special needs welcoming place. We hope to get him his bike soon and have that beautiful soul happy! We thank you in andvace for any support given, we know that every penny counts and from bottom of our hearts appreciate it.
My name is Nayeli and I am Ramon Avinas sister.
My brothers custome bike was stolen this past thursday the 17th. This is not a regular bike, it was specifally desined and made to his size and weight since he has special needs. It took a while to get the doctors to aprove and for the funds to be raised to make this bike. Its not cheap nor easy to get all this done, and someone just took it. Ramon is 16 years old and was once a normal little boy who walked, ran, and even rode a bike just like everyone else. As he got older around the age of 7 my parents noticed more delays that were alarming. For years we thought it was Cerebral Palsy but doctors were never too sure, since he seemed to be getting worse. Just recently about 2 years ago we found out trough a very specific genetic test that he has PMD a very rare genetic disorder that unfortunately deteriorates the person and eventually kills them. There is no cure or treatments in the US that can stop it either. Only posible treatments are out of the country and very expensive as well since they are wil stem cells and not approved by US government. So now he is in a weelchair and has a lot of difficulty walking, controling movements and talking. But my parents will never give up. They did all needed to get the bike so that my brother had an escape, he could join his niece and nephew on bike rides and more important have movement and therapy with it. We want to get enough money get another bike , and with any extra help be able to donate to a charity that heleped raise the money before, the name is Variety Childrens Charity, and also hope to help family move to a safer and more special needs welcoming place. We hope to get him his bike soon and have that beautiful soul happy! We thank you in andvace for any support given, we know that every penny counts and from bottom of our hearts appreciate it.
Organizer and beneficiary
Nayeli Oscar
Organizer
San Jose, CA
rafael avina
Beneficiary