After struggling financially for many years, we decided to reach out to family, friends, and the community to raise funds to help our oldest son, 14 year old Nicholas (“Nico”), a loving and affectionate boy, who has suffered from a devastating medical condition since he was 4 months old.
Nico’s story began at 4 months old with a 45 minute seizure, and 3 days in the hospital. This would be the 1st of hundreds of seizures, numerous 911 calls to the house, and multiple visits to the hospital. When he was 1 ½ yrs old, maxed out on 3 medications, Nico suffered a 1 hr. and 40 min. seizure, and was induced into a 10 day coma. At that time, he was diagnosed with “Dravet Syndrome,” a catastrophic, incurable form of epilepsy, very resistant to the traditional treatment of epilepsies. These kids suffer different types of seizures including grand mal, myoclonics, absence, tonic clonic, head drops, etc.
Through the years we have tried multiple combinations of anti-epileptic pharmaceuticals, usually 3 at a time, trying to control the seizures. We also know the side effects of these meds can cause irreparable harm.
Even though Nico is mobile and able to walk, he has poor coordination making him prone to have accidents and injure himself. He also suffers from autism. Nico is non-verbal, is delayed in cognitive development and fine motor skills, still not completely potty trained, has no awareness of danger, and requires 24/7 help with daily living skills.
Nico still suffers seizures, and his prognosis is very uncertain. His life-long condition forces us to have a caregiver full-time in order to help us care for him. There are other resources we desperately want to provide for Nico, specifically in-home speech therapy, and training our “Max” to be a seizure/service dog. We also pay a $250 annual fee to store Matthew and Alex’s cord blood in the hope one day the medical professionals may be able to help Nico with stem cell treatment.
Through the years, we have incurred costly medical expenses, including out-of-state annual medical visits, and medicines not covered by insurance. Nico’s caregiver costs us $1300 per month, which we have incurred for the past 12 years. This expense is also not covered by insurance, or government assistance.
We also hope to take Nico to one of the newly created medical centers devoted to the care and treatment of Dravet Syndrome: “Dravet Comprehensive Care Centers,” located in San Francisco.
Nico needs your help. We are hoping to raise as much money as possible to help with our son’s medical costs.
We would appreciate anything you can give. No donation is too small. Thank you very much, in advance, for your generosity!
Nico, Lili (mom), Jed (dad), brothers Matthew (9 yr) and Alex (7 yr)
Nico’s story began at 4 months old with a 45 minute seizure, and 3 days in the hospital. This would be the 1st of hundreds of seizures, numerous 911 calls to the house, and multiple visits to the hospital. When he was 1 ½ yrs old, maxed out on 3 medications, Nico suffered a 1 hr. and 40 min. seizure, and was induced into a 10 day coma. At that time, he was diagnosed with “Dravet Syndrome,” a catastrophic, incurable form of epilepsy, very resistant to the traditional treatment of epilepsies. These kids suffer different types of seizures including grand mal, myoclonics, absence, tonic clonic, head drops, etc.
Through the years we have tried multiple combinations of anti-epileptic pharmaceuticals, usually 3 at a time, trying to control the seizures. We also know the side effects of these meds can cause irreparable harm.
Even though Nico is mobile and able to walk, he has poor coordination making him prone to have accidents and injure himself. He also suffers from autism. Nico is non-verbal, is delayed in cognitive development and fine motor skills, still not completely potty trained, has no awareness of danger, and requires 24/7 help with daily living skills.
Nico still suffers seizures, and his prognosis is very uncertain. His life-long condition forces us to have a caregiver full-time in order to help us care for him. There are other resources we desperately want to provide for Nico, specifically in-home speech therapy, and training our “Max” to be a seizure/service dog. We also pay a $250 annual fee to store Matthew and Alex’s cord blood in the hope one day the medical professionals may be able to help Nico with stem cell treatment.
Through the years, we have incurred costly medical expenses, including out-of-state annual medical visits, and medicines not covered by insurance. Nico’s caregiver costs us $1300 per month, which we have incurred for the past 12 years. This expense is also not covered by insurance, or government assistance.
We also hope to take Nico to one of the newly created medical centers devoted to the care and treatment of Dravet Syndrome: “Dravet Comprehensive Care Centers,” located in San Francisco.
Nico needs your help. We are hoping to raise as much money as possible to help with our son’s medical costs.
We would appreciate anything you can give. No donation is too small. Thank you very much, in advance, for your generosity!
Nico, Lili (mom), Jed (dad), brothers Matthew (9 yr) and Alex (7 yr)
Organizer
Jed Snyder
Organizer
Las Vegas, NV