Harley Jackson diagnosed with SMA Type 1

Help Harley Get the Care He Deserves

Hi everyone,

Our little boy, Harley, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on January 15, 2024, at just 1 year and 3 months old. This was a devastatingly late diagnosis after months of fighting for answers about why he was so unwell.

From around 4 months old, Harley became very floppy and couldn’t move his arms or legs. He couldn’t lift objects, hold his bottle, or even move his legs at all. He constantly battled infections, severe constipation, and choking on his food. He also had no head control at all.

When we finally received Harley’s diagnosis, it shattered our hearts. We had to learn first aid, receive extensive medical training, and prepare ourselves to care for him at home. During this time, Harley endured pneumonia, RSV three times, multiple chest infections, gastroenteritis, and more. In total, we spent nine weeks in the hospital.

What is SMA Type 1?

SMA is a rare neuromuscular condition caused by a mutation in the SMN1 gene, which leads to the progressive loss of motor neurons. Without treatment, babies with SMA Type 1 typically have a life expectancy of around two years without treatment.

Thankfully, Harley was able to receive Risdiplam (Evrysdi) on the same day of his diagnosis. This isn’t a cure, but it helps slow the progression of SMA. While we are incredibly grateful to the NHS for this treatment, the care available after diagnosis is not enough to support Harley’s needs.

Why We Need Your Help

Harley requires extensive specialist care and equipment, which isn’t covered by the NHS.

• Weekly Physiotherapy: £90 per session (minimum once per week) to strengthen his muscles and prevent further complications.

• Ankle & Spinal Support: His ankle splints help correct stiffness, but he also needs a more comfortable spinal brace, which costs up to £2,000.

• Intensive Physiotherapy Courses: Proven to benefit children with SMA, but too expensive for us to afford alone.

Despite everything Harley has been through, he is the happiest little fighter. He works so hard at simple tasks like holding up his head, but it takes a toll on him—sometimes leaving him so exhausted that he sleeps for hours after physio. Yet, he never stops smiling.

How Your Donations Will Help

The money raised will be shared between:
❤️ SMA UK – Supporting other families and research into SMA.
❤️

❤️ Harley’s Physiotherapy & Equipment Needs – Giving him the best possible quality of life.

We appreciate every single person who takes the time to read Harley’s story, donate, or even just share this page. Every little bit makes a difference.

From the bottom of our hearts, thank you.

❤️ Harley’s Family ❤️