Ry Ry's journey with Dravet
Donation protected
Ryann Faith Ford
“Ry Ry”
Ryann, who is currently 15 months old, is the precious daughter of Steve and Nicole Ford. Ryann is the youngest of their three children (Tanner and Ethan are her loving older brothers). Shortly after birth Ryann began experiencing seizures and was continually aspirating on her milk. Ryann was progressively getting worse despite multiple tests, therapies, medications, feeding tubes etc.
Ry Ry spent countless days/nights at doctor’s appointments, ER visits, ambulance rides, and many overnight stays in the hospital. After extensive testing it was discovered that Ryann is suffering from symptoms of Dravet Syndrome which is a rare, catastrophic, intractable form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. It affects 1:40,000 individuals, 80% of whom have a mutation in their SCN1A gene (which she has) and without proper medications and treatment; there is a higher risk for SUDEP (Sudden unexpected death in epilepsy). Sadly, many children diagnosed with Dravet Syndrome begin to regress at about age two and very few make it into their teens. This diagnosis has been devastating to say the least.
We are coming together as family and friends to help improve the quality of life for Ryann. It is our hope that we will be able to raise enough money to provide resources and opportunities for care that she would in no other way be able to receive. Steve and Nicole are very loving, caring and hard-working parents who go on very little sleep to make sure their children’s needs are being met. However, there comes a time when we have to turn to others for their prayers, love and support to help carry us through these difficult and trying times.
Ry Ry has a story to share with this world. She has a beautiful and powerful spirit which is felt by everyone she comes into contact with. We hope that you could help contribute whatever you can to help Ryann and her family through this most difficult time.
The funds raised will go towards costs associated with the purchase of a seizure alert service dog, travel and expenses to seek medical help from Nicklaus Children’s Brain Institute, which located in the state of Florida, and the growing medical expenses.
Thank you so much for being there for Ry Ry and her family!
NOTE: (1/7/18)Transparency is always the best policy, and we ask that you include the following information in your story: At the request of GoFundMe staff they've asked that I clarify the below questions which I'm honored to do so.
Who you are: I'm the older brother of Nicole Ford (McRae) who activated this fundraiser with the full support of her loving family.
Where you're from: I'm born and raised in Sandy, UT. and currently live in South Jordan, UT.
Your relationship to the parties you're raising funds for: I'm the older brother of Nicole Ford (McRae)
How the funds will be used (be specific as possible):
1- A Dravet Syndrome Service Dog and the specialized trainer
2- A trip to Florida to visit a specialized brain hospital to map out Ryann's brain for the purpose to design a care plan that is customized to her individual needs. The funds will also go towards the enrollment into the week long program and travel expenses to get there.
3- Existing growing medical bills from previous incidents
If you intend to withdraw the money, how you plan to send the funds to the parties you're raising money for or use the money on their behalf : Yes, I intend to withdraw the funds into my personal bank account so we can then collect the donations to present them to Nicole and Steve in one lump sum during a private family gathering.
“Ry Ry”
Ryann, who is currently 15 months old, is the precious daughter of Steve and Nicole Ford. Ryann is the youngest of their three children (Tanner and Ethan are her loving older brothers). Shortly after birth Ryann began experiencing seizures and was continually aspirating on her milk. Ryann was progressively getting worse despite multiple tests, therapies, medications, feeding tubes etc.
Ry Ry spent countless days/nights at doctor’s appointments, ER visits, ambulance rides, and many overnight stays in the hospital. After extensive testing it was discovered that Ryann is suffering from symptoms of Dravet Syndrome which is a rare, catastrophic, intractable form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. It affects 1:40,000 individuals, 80% of whom have a mutation in their SCN1A gene (which she has) and without proper medications and treatment; there is a higher risk for SUDEP (Sudden unexpected death in epilepsy). Sadly, many children diagnosed with Dravet Syndrome begin to regress at about age two and very few make it into their teens. This diagnosis has been devastating to say the least.
We are coming together as family and friends to help improve the quality of life for Ryann. It is our hope that we will be able to raise enough money to provide resources and opportunities for care that she would in no other way be able to receive. Steve and Nicole are very loving, caring and hard-working parents who go on very little sleep to make sure their children’s needs are being met. However, there comes a time when we have to turn to others for their prayers, love and support to help carry us through these difficult and trying times.
Ry Ry has a story to share with this world. She has a beautiful and powerful spirit which is felt by everyone she comes into contact with. We hope that you could help contribute whatever you can to help Ryann and her family through this most difficult time.
The funds raised will go towards costs associated with the purchase of a seizure alert service dog, travel and expenses to seek medical help from Nicklaus Children’s Brain Institute, which located in the state of Florida, and the growing medical expenses.
Thank you so much for being there for Ry Ry and her family!
NOTE: (1/7/18)Transparency is always the best policy, and we ask that you include the following information in your story: At the request of GoFundMe staff they've asked that I clarify the below questions which I'm honored to do so.
Who you are: I'm the older brother of Nicole Ford (McRae) who activated this fundraiser with the full support of her loving family.
Where you're from: I'm born and raised in Sandy, UT. and currently live in South Jordan, UT.
Your relationship to the parties you're raising funds for: I'm the older brother of Nicole Ford (McRae)
How the funds will be used (be specific as possible):
1- A Dravet Syndrome Service Dog and the specialized trainer
2- A trip to Florida to visit a specialized brain hospital to map out Ryann's brain for the purpose to design a care plan that is customized to her individual needs. The funds will also go towards the enrollment into the week long program and travel expenses to get there.
3- Existing growing medical bills from previous incidents
If you intend to withdraw the money, how you plan to send the funds to the parties you're raising money for or use the money on their behalf : Yes, I intend to withdraw the funds into my personal bank account so we can then collect the donations to present them to Nicole and Steve in one lump sum during a private family gathering.
Organizer
Jason McRae
Organizer
Alta Vista Subdivision Number 1, UT
