Baby Carson needs your help
Please Help Carson Live His Life
Our beautiful grandson, Carson Prisco, was born with an extremely rare gene mutation called SCN8A. It causes uncontrolled epilepsy and developmental delays. In some cases, it can even lead to death. There are roughly 300 known cases of SCN8A worldwide and no cure. Carson’s genetic variant is the first known case of its kind. Since SCN8A is so rare, the doctors who see him can’t provide answers or alleviate his symptoms. There is no clear path for treatment.
Seizure medications have not worked to control his seizures. Carson’s rare seizure type is known as Infantile Spasms that lead to severe developmental delay and cause devastating damage to his brain. Carson went through 2 rounds of high dose steroids in an attempt to stop his seizures. The last steroid treatment included over 50 injections by needle that his parents who have no medical training had to administer. These treatments also did not help. Carson has had numerous emergency room visits because his at-home rescue medicines couldn’t stop the other seizures he has had. Our grandson is currently 13 months old and is developmentally at 3 months old. He cannot support his head, rollover, follow objects with his eyes, and doesn’t show interest in toys. The repeated hospital visits, sleep deprivation, and developmental setbacks have had devastating consequences on the whole family. This is a constant nightmare with no end in sight.
Due to the constant threat of seizures, Carson needs to be watched around the clock. Our daughter-in-law Paula had to quit working in order to give him medications all day long, take him to doctor appointments, and track his seizures because he may need to be rushed to the hospital at a moment’s notice. Todd, our son, works to support them financially. Paula and Todd’s daily life consists of struggling with medical staff errors, dealing with denied insurance coverage of medications, trying to find proper therapies to help Carson gain some developmental milestones, and finding quality at home nursing support.
We are asking for funds to support the family so they can get equipment and medications that are not covered by insurance. Carson spends most of his days on a Boppy pillow. He needs specialized medical equipment for seating support in the home, bathtub, and car. Health insurance will only cover a certain number of therapies, so we are asking for money to cover those therapies not paid for by insurance. We are asking for funds to get overnight nursing provided by a qualified nurse with experience in high risk infants.
Instead of the never ending memories of trips to the hospital and daily seizures, we are asking for your help financially in the hopes that this additional help can create positive memories that will outweigh the negative. Please help contribute what you can so that Todd and Paula’s memories of Carson include his first words, his first hugs, and all the other milestones a young family should share together.
Our beautiful grandson, Carson Prisco, was born with an extremely rare gene mutation called SCN8A. It causes uncontrolled epilepsy and developmental delays. In some cases, it can even lead to death. There are roughly 300 known cases of SCN8A worldwide and no cure. Carson’s genetic variant is the first known case of its kind. Since SCN8A is so rare, the doctors who see him can’t provide answers or alleviate his symptoms. There is no clear path for treatment.
Seizure medications have not worked to control his seizures. Carson’s rare seizure type is known as Infantile Spasms that lead to severe developmental delay and cause devastating damage to his brain. Carson went through 2 rounds of high dose steroids in an attempt to stop his seizures. The last steroid treatment included over 50 injections by needle that his parents who have no medical training had to administer. These treatments also did not help. Carson has had numerous emergency room visits because his at-home rescue medicines couldn’t stop the other seizures he has had. Our grandson is currently 13 months old and is developmentally at 3 months old. He cannot support his head, rollover, follow objects with his eyes, and doesn’t show interest in toys. The repeated hospital visits, sleep deprivation, and developmental setbacks have had devastating consequences on the whole family. This is a constant nightmare with no end in sight.
Due to the constant threat of seizures, Carson needs to be watched around the clock. Our daughter-in-law Paula had to quit working in order to give him medications all day long, take him to doctor appointments, and track his seizures because he may need to be rushed to the hospital at a moment’s notice. Todd, our son, works to support them financially. Paula and Todd’s daily life consists of struggling with medical staff errors, dealing with denied insurance coverage of medications, trying to find proper therapies to help Carson gain some developmental milestones, and finding quality at home nursing support.
We are asking for funds to support the family so they can get equipment and medications that are not covered by insurance. Carson spends most of his days on a Boppy pillow. He needs specialized medical equipment for seating support in the home, bathtub, and car. Health insurance will only cover a certain number of therapies, so we are asking for money to cover those therapies not paid for by insurance. We are asking for funds to get overnight nursing provided by a qualified nurse with experience in high risk infants.
Instead of the never ending memories of trips to the hospital and daily seizures, we are asking for your help financially in the hopes that this additional help can create positive memories that will outweigh the negative. Please help contribute what you can so that Todd and Paula’s memories of Carson include his first words, his first hugs, and all the other milestones a young family should share together.
Co-organizers (2)
Christine Suarez
Organizer
Santa Monica, CA
Todd Prisco
Beneficiary
James Prisco
Co-organizer