Theo is almost one year of age from Market Drayton. When Theo was welcomed into the world in July 2024, unexpected symptoms meant he was admitted to NICU at just 5hours old. We thought our worlds were turned upside down at that moment, seeing our newborn covered in wires in intensive care, feeding him through an NG tube. Little did we know that a few days down the line we would hear the words of our baby boy’s diagnosis, a genetic condition that we were blissfully unaware of until it changed our lives forever.

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

We were told of Theo’s diagnosis when he was just 11 days old. Theo had the most severe type of SMA due to the symptomatic from birth and we were informed that without treatment, he would be unlikely to see his 1st birthday.

It was an excruciatingly long, painful wait from hearing this news in August 2024, to finally receiving the go ahead for Theo to have Zolgensma, gene therapy in Jan 2025. This incredible (£1.78million!) one-off treatment delivers a functional SMN1 gene by IV infusion. We are incredibly grateful to the NHS for enabling Theo to receive gene therapy and have seen huge improvements in his muscle strength since the infusion. However, Theo still requires continuous therapies of physio and hydrotherapy)to preserve muscle function, improve mobility and prevent muscle contractures. This comes at a huge weekly expense. We currently self-fund fortnightly physio sessions at £90 a time, and as a family we have already funded spinal bracing for Theo to prevent his already present scoliosis from worsening.

Ongoing therapies for Theo will be life long, plus specialist equipment and home adaptations as our boy grows up.

We are eternally grateful to anyone who would choose to fundraise in aid of Just4Children for Theo to support these ongoing costs.

Thank you so much for reading and supporting our family

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