- K
- J
- L
Hi there, my name is Cat, and I am the proud mom of Charlie, a determined little boy diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA Type 1 is a severe, genetic neuromuscular disorder characterised by rapid, progressive muscle weakness, low muscle tone , and breathing difficulties.
As there is no newborn screening in the U.K., Charlie was diagnosed in October 2024 at 8-weeks-old and by that point had already lost his head control and limb function, and experienced respiratory distress.
Charlie spent 2 months in hospital for his breathing challenges and was treated with Zolgensma, a one-time gene therapy, in December 2024. However, his disabilities, respiratory support, and ongoing physiotherapy will remain lifelong.
Charlie is a resilient and absolutely joyful little boy. We are reaching out because we need your help to cover the ongoing costs of his treatment and therapy, which include:
- Private physiotherapy sessions (£90 / $120.55 per session)
- Intensive physiotherapy programs (€1,990 / $2,200 per week at Swimlab International)
- Custom orthotics (€2,000+ / $2,500+ for leg splints and spine bracing)
- Additional therapy supports (£900 / $1,200 for Flexa therapy suit)
The fact is, while Charlie's dad Chris and I are both full-time working parents, the total cost for Charlie's ongoing treatment and needs is substantial (and we have to support our older daughter and want to be the most present parents for her!). We want the absolute BEST life for our son and these therapies are vital for Charlie's quality of life and development.
Outcomes from Charlie's ongoing therapies/supports include:
- Motor skills: Physiotherapy for Charlie is ESSENTIAL. As a result of his weekly physio, Charlie has established independent sitting, rolling, pushing up in tummy time on a wedge, supported kneeling and standing (with orthotics)
- Respiratory strength: Breathing is critical for Charlie's health. As Charlie has become stronger physically, he has managed illnesses without hospital intervention better and is less dependent on ventilation.
- Orthopaedic support: Children with SMA struggle with orthopaedic complications like scoliosis and hip dislocation. Charlie's use of spinal and leg orthotics, physio, spinal stimulation (NISE Stim) are all helping to minimise his spinal curve.
Every donation, no matter how small, will make a significant difference in his life. If you can’t donate, sharing this campaign with your friends and family would mean the world to us.
We appreciate your kindness and support as we navigate this challenging journey together. Follow along on my Instagram (https://www.instagram.com/iamcatpowers) to see Charlie's progress!
Co-organizers4
