Johnathan's Fight against NPC
Donation protected
On March 9, 2010, our family received devastating news! Our three year old little man, Johnathan, had a rare and incurable disease called Niemann-Pick Disease, Type C (NPC) . We were told by doctors that Johnathan would most likely not survive to see his teenage years. He would slowly lose everything; his ability to walk, talk and eat. They call this illness “Childhood Alzheimer” because it robs children of everything. Our family and friends were devastated.
Now almost six years later we have HOPE. Unfortunately it has not come fast enough for many of our Niemann-Pick Disease (NPD) families and we have watched many children lose their lives. It has broken our hearts. Our NPD community is amazing and has become our family. Every time we lose a child or a child is suffering, we all try to support one another.
Our small Gilroy community has raised tens of thousands of dollars towards a cure, our children have donated blood for a cure and it has been more incredible than words could ever express.
As of today, there is still no cure, but we are getter closer to finding one. Johnathan has been on a non-FDA approved medication that has helped to slow down the progression.
While Johnathan does show some signs of NPC, like an enlarged liver and spleen, hearing loss, as well as learning disabilities, but we are blessed that is all.
For the past year Johnathan has been in a clinical trial at the NIH in Maryland getting an infusion through his spine of Cyclodextrin
. As of Febuary 2016 Johnathan will finally be able to stay in state for his medication infusion. He will be going every three weeks to CHOC .
While, it is not a cure and it is in the beginning stages of this trial, we are praying it will help take the cholesterol out of the brain and help give us more time until we find a cure.
While there are some risks and Johnathan will have to go through numerous test, such as MRI’s, hearing screenings, swallowing tests, skin biopsies, spinal taps, IVs, blood draws and go under anesthesia, this is the only way to save his life and through the trial he will also be helping other children in the future.
When we first found out about Johnathan’s illness, together with our family and amazing friends, we started “Johnathan’s Dreams ”. Now his dreams might be coming true, so support and awareness is critical.
Prayers and positive thoughts are always wanted!
Now almost six years later we have HOPE. Unfortunately it has not come fast enough for many of our Niemann-Pick Disease (NPD) families and we have watched many children lose their lives. It has broken our hearts. Our NPD community is amazing and has become our family. Every time we lose a child or a child is suffering, we all try to support one another.
Our small Gilroy community has raised tens of thousands of dollars towards a cure, our children have donated blood for a cure and it has been more incredible than words could ever express.
As of today, there is still no cure, but we are getter closer to finding one. Johnathan has been on a non-FDA approved medication that has helped to slow down the progression.
While Johnathan does show some signs of NPC, like an enlarged liver and spleen, hearing loss, as well as learning disabilities, but we are blessed that is all.
For the past year Johnathan has been in a clinical trial at the NIH in Maryland getting an infusion through his spine of Cyclodextrin
. As of Febuary 2016 Johnathan will finally be able to stay in state for his medication infusion. He will be going every three weeks to CHOC .
While, it is not a cure and it is in the beginning stages of this trial, we are praying it will help take the cholesterol out of the brain and help give us more time until we find a cure.
While there are some risks and Johnathan will have to go through numerous test, such as MRI’s, hearing screenings, swallowing tests, skin biopsies, spinal taps, IVs, blood draws and go under anesthesia, this is the only way to save his life and through the trial he will also be helping other children in the future.
When we first found out about Johnathan’s illness, together with our family and amazing friends, we started “Johnathan’s Dreams ”. Now his dreams might be coming true, so support and awareness is critical.
Prayers and positive thoughts are always wanted!
Organiser
Keith Spencer
Organiser
Gilroy, CA
