Collins Family Fundraiser
Donation protected
On June 14th from 6-10pm at the Plattduetsche Park Beirgarten, in Franklin Square we are holding a fundraiser for Brady and Luke Collins, two little boys diagnosed with a rare blood disease called Niemann-Pick Disease (NPD) Type B.
NPD Type B is a lysosomal storage disease caused by a deficiency in the enzyme required to break down a lipid called sphingomyelin. The lipid can build up causing cell death and organ malfunction. NPD Type A & B affects 1 in 250,000 people. There are only 1,200 cases known worldwide. There is no cure, and there is no treatment for Niemann-Pick Disease.
Nicole and Joey’s world was turned upside down as they learned of Brady’s diagnosis and then the devastating news that their new baby Luke also has NPD.
"Learning of Brady’s diagnosis was unbearable. But knowing that BOTH your babies have this awful disease is just beyond words. My heart is broken. If I can say anything positive at all, it’s that at least Brady will never feel different or alone. Whatever they are up against, they will get through it together."
Moving forward, the family will need to visit with the leading research team for NPD at Mt. Sinai every 6 months so that Brady and Luke can be monitored closely for bone and organ functioning. They will have a daily routine of medications and vitamins to help build up their strength so their comprised immune systems can fight off germs. Even the common cold could lead to much more serious complications for the boys. In the meantime the Collins family, Nicole, Joey, Brady, Luke, and big brother Dylan, is focusing on keeping Brady and Luke as healthy and happy as they can while creating happy memories for their family.
Please join in helping the Collins Family provide the best care for and create happy memories with their little boys. Hopefully you can join us at the event, but if you can't, we've created this page to make it easy to contribute if you wish to do so. No contribution is too big or too small.
We thank you for whatever support you are able to give and for keeping this family in your heart.
Link to Facebook Event
NPD Type B is a lysosomal storage disease caused by a deficiency in the enzyme required to break down a lipid called sphingomyelin. The lipid can build up causing cell death and organ malfunction. NPD Type A & B affects 1 in 250,000 people. There are only 1,200 cases known worldwide. There is no cure, and there is no treatment for Niemann-Pick Disease.
Nicole and Joey’s world was turned upside down as they learned of Brady’s diagnosis and then the devastating news that their new baby Luke also has NPD.
"Learning of Brady’s diagnosis was unbearable. But knowing that BOTH your babies have this awful disease is just beyond words. My heart is broken. If I can say anything positive at all, it’s that at least Brady will never feel different or alone. Whatever they are up against, they will get through it together."
Moving forward, the family will need to visit with the leading research team for NPD at Mt. Sinai every 6 months so that Brady and Luke can be monitored closely for bone and organ functioning. They will have a daily routine of medications and vitamins to help build up their strength so their comprised immune systems can fight off germs. Even the common cold could lead to much more serious complications for the boys. In the meantime the Collins family, Nicole, Joey, Brady, Luke, and big brother Dylan, is focusing on keeping Brady and Luke as healthy and happy as they can while creating happy memories for their family.
Please join in helping the Collins Family provide the best care for and create happy memories with their little boys. Hopefully you can join us at the event, but if you can't, we've created this page to make it easy to contribute if you wish to do so. No contribution is too big or too small.
We thank you for whatever support you are able to give and for keeping this family in your heart.
Link to Facebook Event
Organizer
Kristin Morrissey DeLuca
Organizer
Westbury, NY
