Theo’s story;

Theo was welcomed into the world by his first time parents, Simon and Laura in July 2024. After a straightforward, scare free pregnancy, it was a huge shock to the family when Theo was admitted to NICU at just 5hours old due to symptoms of Hypotonia (‘floppy baby syndrome’). It didn’t seem like things could get worse from that moment than seeing Theo as a newborn covered in wires in intensive care, feeding him through an NG tube, watching him undergo multiple tests and investigations. Until 11/08/2024 when the family first heard the words Spinal Muscular Atrophy, which genetic testing confirmed was Theo’s diagnosis.

SMA Type 1 is a rare neuromuscular condition causing progressive muscle wasting and weakness, affecting breathing, swallowing, limb movement crawling, sitting and walking ability.

It was confirmed that Theo had the most severe type of SMA due to his symptoms being present from birth and we were informed that without treatment, he would be unlikely to see his 1st birthday.

Today, January 2026, is a different story for Theo’s prognosis thanks to him receiving the wonder drug, Zolgensma, this time last year. The £1.8million gene therapy treatment, the most expensive one time infusion, performed nothing short of a miracle for Theo, delivering him a healthy, functional copy of the missing gene that is the cause for his condition.

As amazing as this is, the fight doesn’t stop for Theo after treatment. Treatment is not a cure for SMA, and it will never just go away. The damage that was caused to Theo’s motor neurones before treatment cannot be reversed. This still means a life of constant support, hospital appointments and admissions and lot of therapies and equipment which are not covered by the NHS.

Theo receives private physiotherapy, hydrotherapy, spinal bracing for his scoliosis and an endless list of other specialist equipment, all of which is essential to keep Theo comfortable and give him the best chance at continuing to thrive.

2026 is going to be a huge year for Theo. He will be undergoing two surgeries in the spring. One for hip surgery, due to hip dysplasia coming hand in hand with SMA due to the severe muscle weakness preventing correct growth and support of the hip joints. He will also receive a PEG (gastrostomy) which is a procedure to allow a feeding tube to be placed directly into Theo’s stomach to deliver his fluids and medications due to having an unsafe swallow for liquids.

This year, Theo will also require more equipment - a specialist supportive pushchair, a manual wheelchair and some custom orthotics. The family would love to continue, if not increase the amount of physiotherapy Theo currently receives, whilst so young he is at his most neuroplastic with the potential to develop more with his ability to perform the kind motor skills that come easily to a typical child - rolling, sitting, standing. Standing would not be physically possible for Theo if it wasn’t for the therapies he has already received. It would be amazing if we can see him take an independent step one day, so until then we will continue to push to be able to give him the best possible chance at life. Every donation will go towards this, and the support means the world to Theo’s family. 💙