Help 2 Brothers with Special Needs
Donation protected
We are a hardworking family that recently have had mounting medical bills for our 2 children with special needs
Our oldest child had an undiagnosed condition; but recently- (after we started this campaign) we received a diagnosis from University of Michigan called Aicardi Goutieres Syndrome; this Dx is rare and we now know that both boys carry the gene markers for it. This is a syndrome that will continue to show regression.
Taylor (our oldest); is a bright, loving child who is excited when the movie "Frozen" comes on, or when he is able to read a disney book to little ones or when he can watch anything Disney on the computer (has a theme there doesn' it?)
He use to walk (run) with a walker. Now he uses a wheelchair-but never complains; he has a difficult time communicating and is rapidly losing his motor skills- but his smile lights up a room. He has had to have several surgeries and until recently has been navigating himself around in a push wheelchair; but has been lagging behind and losing his independence. We have had to obtain a motorized wheelchair and with that you have to have a van to be able to transport him.
Between extra therapy costs, co-pays for his last surgery, co-pays for medications and renovations we had to make to our home for wheelchair accessibility + having to buy a van to accomodate his wheelchair (all of which is not covered by our insurance); - has put our household into great debt. We now are having to face that our second son is digressing and going through the same things
Mom has spent her life caring for other people, volunteering rescue (EMS) and firefighting hours, collecting Toys for Toys, raising money for Ambucs (which is an organization that builds bikes for kids with special needs) and helping to raise funds for horse therapy, March of Dimes and Special Olympics
Our second son also carries the gene for Acardi Goutieres Syndrome, has Cerebral Palsy and had bilateral retinal detachments but still tries to help his brother when he can-even with low vision. His regression has not been as rapid as his bothers' but is getting more noticable and now instead of walking on his own, he is now using a walker.
Both kids are wonderful, happy and they love life. They have never complained about Doctor appts , lab draws, therapies and even exclusions from some neighbrhood activities; but with Taylor and his exacerbation of symptoms we know that every year is a blessing to have him. And now Koty is going down the same path
This is just a small snapshot into why we are now asking for help. These children are beautiful and loving children who have helped Mom with raising funds for others needs- so they understand what it means to give back. Now they are in need of assistance .
If you have an extra $5 ; we would truly appreciate it.
They dream of being Iron Man and Captain America. Can you help them feel like they are?
Thank you
No donation is too small. Thank you
If you have any questions regarding this campaign-please ask.
Please, Please pass on to your frineds. Thank you
Our oldest child had an undiagnosed condition; but recently- (after we started this campaign) we received a diagnosis from University of Michigan called Aicardi Goutieres Syndrome; this Dx is rare and we now know that both boys carry the gene markers for it. This is a syndrome that will continue to show regression.
Taylor (our oldest); is a bright, loving child who is excited when the movie "Frozen" comes on, or when he is able to read a disney book to little ones or when he can watch anything Disney on the computer (has a theme there doesn' it?)
He use to walk (run) with a walker. Now he uses a wheelchair-but never complains; he has a difficult time communicating and is rapidly losing his motor skills- but his smile lights up a room. He has had to have several surgeries and until recently has been navigating himself around in a push wheelchair; but has been lagging behind and losing his independence. We have had to obtain a motorized wheelchair and with that you have to have a van to be able to transport him.
Between extra therapy costs, co-pays for his last surgery, co-pays for medications and renovations we had to make to our home for wheelchair accessibility + having to buy a van to accomodate his wheelchair (all of which is not covered by our insurance); - has put our household into great debt. We now are having to face that our second son is digressing and going through the same things
Mom has spent her life caring for other people, volunteering rescue (EMS) and firefighting hours, collecting Toys for Toys, raising money for Ambucs (which is an organization that builds bikes for kids with special needs) and helping to raise funds for horse therapy, March of Dimes and Special Olympics
Our second son also carries the gene for Acardi Goutieres Syndrome, has Cerebral Palsy and had bilateral retinal detachments but still tries to help his brother when he can-even with low vision. His regression has not been as rapid as his bothers' but is getting more noticable and now instead of walking on his own, he is now using a walker.
Both kids are wonderful, happy and they love life. They have never complained about Doctor appts , lab draws, therapies and even exclusions from some neighbrhood activities; but with Taylor and his exacerbation of symptoms we know that every year is a blessing to have him. And now Koty is going down the same path
This is just a small snapshot into why we are now asking for help. These children are beautiful and loving children who have helped Mom with raising funds for others needs- so they understand what it means to give back. Now they are in need of assistance .
If you have an extra $5 ; we would truly appreciate it.
They dream of being Iron Man and Captain America. Can you help them feel like they are?
Thank you
No donation is too small. Thank you
If you have any questions regarding this campaign-please ask.
Please, Please pass on to your frineds. Thank you
Organizer
Tina McIntire-strain
Organizer
Freeland, MI