Help Symphony Beat KCNQ5 Epilepsy

Help Symphony Fight KCNQ5 Epilepsy & Find Stability

Hi, my name is Tyra, and I’m reaching out for help for my sweet 2-year-old son, Symphony. He was recently diagnosed with KCNQ5 Gene Mutation Epilepsy, a rare and severe condition that has turned our world upside down.

Symphony is the middle sibling of our family—he has a 9-year-old big brother, Karter, and a 6-month-old baby sister, Kartier. His first seizure happened at just 18 months old after catching the flu, lasting an agonizing 45 minutes. This past January, after his first snow day, he fell ill with the flu again. On January 24th, he suffered four seizures in two days, setting off three months of ER visits, over 15 hospital stays, and even a PICU admission.

The worst episode happened on Valentine’s Day—his big brother Karter’s birthday. That day, Symphony had eight seizures, and we spent six days in the hospital trying to get them under control. Watching him go through so much pain has been heartbreaking, and we are desperate to find better treatment and answers.

Today, Symphony is on six medications twice a day to manage his condition. He requires 24-hour care, which has made it impossible for both of his parents to work full-time. His father, Patrick, had to leave his job at the state docks to care for Symphony full-time, while I work at a salon to help support our family. Unfortunately, the financial strain has led to us losing our home. We have stayed with family members and are currently living in a homeless shelter while searching for stability.

We are humbly asking for $10,000 to help with:

• Medical expenses not covered by insurance

• A service dog and training to assist with seizures

• Hiring a caregiver so both parents can work

• Travel and stay in Birmingham, AL to see a specialist who may help our baby

Symphony will turn 3 years old on May 4th, and our biggest wish is to get him the care he needs so he can enjoy life again. Any amount you can donate, big or small, would mean the world to our family. If you’re unable to give, a share of our story would be just as powerful.

Thank you for your kindness, prayers, and support. We are forever grateful.

With love,

Tyra, Patrick, Karter, Symphony & Kartier