Killorglin family’s plea for HSE to fund ‘miracle drug’ to help baby Theo

A Killorglin family is pleading with the HSE to provide a ‘miracle’ drug for their baby, a drug which will give him a better quality and prolonged life.

ive-month old Theo is the first child of Shane Whelan and his partner, Stephanie. Their bundle of joy was born on April 29 at University Hospital Kerry. However, just a few months after his birth his parents noticed that he had low muscle tone and couldn’t hold his head up. After investigations by Theo’s medical team and his parents, Theo was diagnosed with Spinal Muscular Atrophy (SMA) – a genetic condition that affects Theo’s movement.

Shane, who has a background in genetics, did much of the research himself, and both he and Stephanie were tested for the gene for SMA, which led to Theo’s diagnosis of SMA type 1 – a very severe type.