💔 A simple £5 heel prick test could have drastically changed little Lucian’s life journey, highlighting a critical cause many parents are now championing. Welsh mum, Samantha Williams from Newport, knows the emotional rollercoaster of SMA Type 1 all too well.
When Lucian was just seven weeks old, Samantha and her partner Justin faced the heartbreaking news of their son’s diagnosis. They were advised to prepare for the worst. Yet against the odds, Lucian has defied expectations. At two and a half, he can sit, stand with help, and is filled with a joyful spirit. 🎈
Samantha passionately advocates for a nationwide rollout of NHS heel prick tests for early SMA detection. “A £5 test could have meant a different start for Lucian,” she shares, urging early diagnosis to halt muscle degeneration.
Pop star Jesy Nelson’s revelation that her twins Ocean and Story also face the SMA battle resonates deeply with Samantha. She offers encouragement, having walked a similar path and holding onto hope even in the darkest times.
Despite an initial bleak outlook, Lucian became one of the few fortunate enough to access Risdiplam, an at-home oral drug that creates the missing proteins he desperately needed. This sparked a flicker of hope, leading to “miracle” gene therapy that’s changed his trajectory. 🦋
Every smile and milestone reached reminds Samantha of what could have been: a life undominated by a cruel condition.
Lucian’s inspiring story is a reminder of why screening for SMA is vital. It’s more than just early detection; it’s about giving children the fighting chance they deserve for a life of possibility. ❤️
Support this life-changing campaign and spread awareness so all parents can have options, and all children can have hope. 🧡