Help us fight for River! (Rare epilepsy disease)

Meet River. The sweetest and most loving little boy.

Shortly after River's second birthday, River had his first seizure. He stopped breathing and received CPR from his nanny before the fire department arrived. He was hospitalized for a few nights while doctors did a series of diagnostic tests, and they found no reason or cause for the seizure. River came home, and a few months later, he returned to the hospital after having several more episodes. At the time, he was diagnosed with epilepsy and was placed on medications, which seemed to work until February of 2022.

The night after Valentine's Day 2022, River had a prolonged seizure, which required rescue medications and an ambulance to the emergency room. This incident started a cascade of events that would completely change our lives in a short period of time. River began having daily seizures that were increasing in severity and duration, and he started having different types of seizures. At its peak, River had over one hundred seizure episodes in a single day. He was eventually diagnosed with a rare form of epilepsy called Myoclonic Astatic Epilepsy, or Doose Syndome.

Doose Syndrome is a type of epilepsy that only affects a small number of children yearly and is not well studied. It is believed to be genetic in origin and is extremely difficult to control with medications. Many children are unable to treat and the long-term prognosis is not well understood. Children with M.A.E. are at high risk of SUDEP or Sudden Unexplained Death in Epilepsy Patients due to the lack of control and frequency of seizures.

Since River's diagnosis, he has been hospitalized almost a dozen times, including at least 20 visits to the Emergency Room since February of this year. During this time, River has been on over a dozen different medications, many of which have had severe side effects that have delayed his development and ability to thrive like a typical three-year-old. Also, due to the seizures and medications, he has lost the drive to eat by mouth, resulting in needing a gastro tube (G-TUBE) and getting all his nutrition by tube feeds. Over the last nine months, River has regressed in many developmental areas such as speech and physical abilities and is requiring special education, occupational therapy, speech therapy, feeding therapy, and physical therapy to help his development.

River's seizures have also resulted in numerous injuries from sudden falls and drops (Atonic Seizures) including: a broken nose, split chin, and impacted and fractured teeth.

We have been fighting for River every single day and have moved his care to the Children's Hospital of Philadelphia (CHOP) where we have worked with numerous specialists who work with children like River. We still hope to find treatments that will help him, including several drug and nutritional therapies. To date, River has had thousands of seizures and we don't know what the long-term damage will be.

This past year has been extremely difficult on the family, and we have dropped everything to fight for River. Even with great insurance, it has been a serious financial burden with co-pays, travel expenses, childcare assistance, and more. We have had to take significant amounts of time off from work to be in the hospital and have depleted much of our leave. We have used much of our life savings to pay for healthcare expenses and related costs.

It is extremely difficult to ask our friends, family, and co-workers for financial help, but in the end, we decided to start this Go Fund Me for River, not ourselves. We don't know the long-term outcome for River, but we will continue to fight for him every single day, as he is the sweetest and most loving boy we have ever met.

Thank you for any help at all, whether it's a dollar or more, or even just sharing with others. All money raised will be used to pay outstanding medical bills, co-payments, safety equipment (helmets and padding), travel expenses (to and from CHOP in Philadelphia), and respite childcare assistance.

Thank you from the bottom of our hearts.