Why We’re Raising Funds for Summer & Tilly

We want to share a heartfelt story about our daughter Summer and her beautiful baby girl, Tilly. This hasn’t been easy to write, but we hope it helps people understand why we’re asking for support, and why every bit of kindness truly matters.

Summer was just 15 years old when she found out she was 16 weeks pregnant. It was an overwhelming moment, filled with emotions none of us expected. But as her parents, I we chose to stand beside her with unconditional love and support. She showed remarkable strength, and together we embraced this unexpected journey.

Summer’s pregnancy went smoothly, with no signs of trouble. Then on January 11th, 2025, she gave birth to Tilly, a stunningly perfect little girl, weighing 7lb 5oz. From the moment she arrived, Tilly radiated strength. She could kick her legs, lift her head, and grasp with her tiny fingers. She was thriving.

But after a few weeks, we began noticing changes. Tilly’s movements slowly started to regress, and she wasn’t hitting her developmental milestones. Feeding became difficult, and she began choking frequently. Concerned, we reached out to our health visitor, and our GP immediately recognized the seriousness of our worries.

On June 17th, a paediatric consultant assessed Tilly. That day, our world shifted. The consultant explained that she suspected Tilly had Spinal Muscular Atrophy (SMA). Something we’d never heard of before. We were told to “go home, make memories, be at peace and pray!”

Further tests confirmed the diagnosis: SMA Type 1, the most severe form.

There’s no cure for SMA, and receiving that news was absolutely heartbreaking. But there is treatment—and treatment gives hope. With early intervention, SMA progression can be slowed, and in some cases, even stopped. For Tilly, every day is precious, and every moment counts.

We’re fundraising to ensure Tilly gets access to the best possible care and life-enhancing interventions, equipment as well as any adaptions that will be needed for Tilly at home. Summer, still so young herself, has shown incredible courage throughout this journey—but she can’t do it alone. We hope you’ll support them, share Tilly’s story, and help give her a fighting chance at the life she so deeply deserves.

Thank you for your love, support, and compassion