When Gabriel Dehen was born on October 16th 2014, David and Christina's prayers had been answered. However, within moments of delivery, it became very evident something was not right and Gabriel was whisked away for immediate testing. Gabe was in the hospital for nearly 6 weeks before his parents were allowed to finally take him home, and things did not improve.
It became clear that Gabe would need some genetic testing done, to try to diagnose his illness. Through this testing, it was discovered Gabe suffers from an extremely rare genetic disorder, an X Chromosome deletion in the PIGA gene which causes his brain and brain stem to degenerate. This condition is so rare it doesn't have a name. There are only about 24 known cases in the entire world, and only a few case files on those. David and Christina were presented with a diagnosis that no parent should ever hear: Gabriel's condition is fatal. Due to the rarity of the genetic disorder, Gabe and his parents were, and are unable to get any idea as to how long he is expected to live.
Gabe, David and Christina all share a common trait, tenacity. Gabe is now 4 years old, through many, many years of working with their Medical staff, Gabe has made major strides. He hasn't suffered from the seizure's that were very common early on, and he is currently much more comfortable.
Christina has left her job to provide full time care for Gabe. She takes him to his frequent doctor's appointments and visits, and anywhere else they need to go. This is a massive undertaking as Gabe is hooked up to machines that help him breathe, digest his food, and monitor his vital signs. Gabe has a rather large wheelchair that needs to go with him everywhere. Christina is a tiny woman, at around 5' tall and a bit over 100 pounds herself. It has become increasingly difficult to load Gabe and all of his equipment into the small family car, get to where ever they are going, unload it all then repeat the process again.
This family desperately needs a transport van. That is where you can help! We are looking to raise $40,000 for a USED transport vehicle and a ramp in their garage, that David and Christina can use to load Gabe in and out without having to take him out of and put him back into his chair. Imagine trying to do this during a Michigan snow or rain storm! Please help make Gabriel and his parents lives a bit brighter! Thank you, and God Bless!
https://www.mlive.com/news/grand-rapids/index.ssf/2017/07/family_of_terminally-ill_child.html
It became clear that Gabe would need some genetic testing done, to try to diagnose his illness. Through this testing, it was discovered Gabe suffers from an extremely rare genetic disorder, an X Chromosome deletion in the PIGA gene which causes his brain and brain stem to degenerate. This condition is so rare it doesn't have a name. There are only about 24 known cases in the entire world, and only a few case files on those. David and Christina were presented with a diagnosis that no parent should ever hear: Gabriel's condition is fatal. Due to the rarity of the genetic disorder, Gabe and his parents were, and are unable to get any idea as to how long he is expected to live.
Gabe, David and Christina all share a common trait, tenacity. Gabe is now 4 years old, through many, many years of working with their Medical staff, Gabe has made major strides. He hasn't suffered from the seizure's that were very common early on, and he is currently much more comfortable.
Christina has left her job to provide full time care for Gabe. She takes him to his frequent doctor's appointments and visits, and anywhere else they need to go. This is a massive undertaking as Gabe is hooked up to machines that help him breathe, digest his food, and monitor his vital signs. Gabe has a rather large wheelchair that needs to go with him everywhere. Christina is a tiny woman, at around 5' tall and a bit over 100 pounds herself. It has become increasingly difficult to load Gabe and all of his equipment into the small family car, get to where ever they are going, unload it all then repeat the process again.
This family desperately needs a transport van. That is where you can help! We are looking to raise $40,000 for a USED transport vehicle and a ramp in their garage, that David and Christina can use to load Gabe in and out without having to take him out of and put him back into his chair. Imagine trying to do this during a Michigan snow or rain storm! Please help make Gabriel and his parents lives a bit brighter! Thank you, and God Bless!
https://www.mlive.com/news/grand-rapids/index.ssf/2017/07/family_of_terminally-ill_child.html
Organizer and beneficiary
Christina Dehen
Beneficiary