Jack Grosvenor Special Needs Trust
Donation protected
Here is Jack’s story…..
Jack O'Donnell Grosvenor is my nephew. Jack is 18 years old, and is the son of Mark Grosvenor and Mary Kay O'Donnell, from Harbor Springs, Michigan.
Jack suffers from a rare and catastrophic seizure disorder known as Dravet Syndrome. The hallmarks of this type of epilepsy are severe, difficult-to-treat seizures that begin in infancy. The seizure types vary and are resistant to medications and other treatments and include life-threatening status (lengthy) seizures lasting 20 minutes or more.
In addition to seizures, people with Dravet Syndrome experience cognitive impairment (ranging from profound to mild), affected gait, and orthopedic issues, such as scoliosis. The constant care required for children and adults with Dravet Syndrome has a marked effect on their quality of life and that of their family members.
The occurrence rate of Dravet Syndrome is estimated to be 1:20,000. People with Dravet Syndrome face a 15-20% mortality rate, in part due to SUDEP (Sudden Unexplained Death in Epilepsy), accidents, and prolonged seizures. There is no known cure for Dravet Syndrome.
How You Can Help......
On September 30th through October 4th, I am traveling down to North Carolina to bike accross the state to benefit Jack.
This ride won’t be easy – it is 325 miles and about 15,000 feet of climbing. I've been training a lot for the ride - close to 4,000 miles this year. I’ll need some prayers. The ride will be made easier by knowing that I am riding for one purpose – to benefit this special person. Last year I participated in the Seattle to Portland bike ride for Jack.
Jack has a Special Needs Trust to provide for his long term care, and I’d like to dedicate this ride to Jack, with the hope of raising $20,000 to benefit his trust. For those that are charitably inclined, please consider a monetary gift to Jack, and share this with others. No gift is too small, and all are appreciated.
Thank you so much!
More pictures of Jack.....
Jack O'Donnell Grosvenor is my nephew. Jack is 18 years old, and is the son of Mark Grosvenor and Mary Kay O'Donnell, from Harbor Springs, Michigan.
Jack suffers from a rare and catastrophic seizure disorder known as Dravet Syndrome. The hallmarks of this type of epilepsy are severe, difficult-to-treat seizures that begin in infancy. The seizure types vary and are resistant to medications and other treatments and include life-threatening status (lengthy) seizures lasting 20 minutes or more.
In addition to seizures, people with Dravet Syndrome experience cognitive impairment (ranging from profound to mild), affected gait, and orthopedic issues, such as scoliosis. The constant care required for children and adults with Dravet Syndrome has a marked effect on their quality of life and that of their family members.
The occurrence rate of Dravet Syndrome is estimated to be 1:20,000. People with Dravet Syndrome face a 15-20% mortality rate, in part due to SUDEP (Sudden Unexplained Death in Epilepsy), accidents, and prolonged seizures. There is no known cure for Dravet Syndrome.
How You Can Help......
On September 30th through October 4th, I am traveling down to North Carolina to bike accross the state to benefit Jack.
This ride won’t be easy – it is 325 miles and about 15,000 feet of climbing. I've been training a lot for the ride - close to 4,000 miles this year. I’ll need some prayers. The ride will be made easier by knowing that I am riding for one purpose – to benefit this special person. Last year I participated in the Seattle to Portland bike ride for Jack.
Jack has a Special Needs Trust to provide for his long term care, and I’d like to dedicate this ride to Jack, with the hope of raising $20,000 to benefit his trust. For those that are charitably inclined, please consider a monetary gift to Jack, and share this with others. No gift is too small, and all are appreciated.
Thank you so much!
More pictures of Jack.....
Organizer and beneficiary
Ken Overholt
Organizer
Naperville, IL
Mark Grosvenor
Beneficiary