First Fruits

Meet Kayson Hemphill

Kayson was born on February 7, 2024 and was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) at just 8 days old via newborn screening. Babies diagnosed with SMA start to exhibit symptoms with in the first six months of life. These include but are not limited to: limited head control, decreased muscle tone, difficulty swallowing and difficulty breathing.

SMA is a rare childhood disease, with only about 364 cases diagnosed each year. Without treatment and support, children with Type 1 SMA typically pass before they are able to reach their second birthday. it is the NUMBER ONE genetic cause of infant mortality when left untreated.

Thankfully, Kayson was born in a time of great medical advancements and there are three FDA-approved treatment options for SMA! Kayson has received the world’s MOST EXPENSIVE medication, Zolgensma, at a cost of $2.1 M! This is a one-time gene therapy infusion that gives the patient a working copy of the SMN gene via virus. Kayson is also part of a medical trial out of Atlanta, GA. In this trial, he receives an oral medication, Evrysdi daily.

The medication, specialized medical equipment, therapy and extensive travel days off of work, is costly. All donated funds will go directly to Kayson’s care and provide him the opportunity to accomplish tasks such as sitting on his own.

The family is not only looking for monetary donation, but also believes in the power of prayer, They appreciate all prayer and support throughout this journey and hope you will joining them in watching Kayson defy all odds.