Meet Rupert: The Inspiration Behind the Charity
In this blog post, we want to introduce you to the incredible young boy who inspired the creation of Rally Round Rupert, a children’s charity dedicated to improving the lives of those affected by spinal muscular atrophy. His name is Rupert, and his story has touched the hearts of many.
Rupert was born on March 29, 2021 and was seemingly healthy. But after a fortnight he seemed to be getting physically weaker and by six weeks Charlie said he was “like a potato”. His GP wasn’t concerned but Rupert’s parents saw him “deteriorating fast” and got increasingly worried when he stopped eating too.
On May 19, 2021, Rupert’s breathing became shallow “like he had given up” – and he was rushed to hospital. Luckily he was stabilised, but blood tests that followed confirmed he had SMA. He had type one – the most severe form – which meant all of his muscles would waste over time.
Charlie said: “Before we found out more about the condition, we thought it just affected physical mobility. We didn’t know that with muscle wastage the muscles around his lungs, heart, and bowels would deteriorate too. Doctors told us to get as many of the family to meet him as possible, because he wouldn’t live past seven months old.”
After the couple pleaded with doctors, Rupert given a new gene therapy drug – Zolgensma – which had only become available on the NHS months earlier. After having the one-time treatment in June, his physical deterioration slowed down significantly. Charlie – also mum to Wilf, eight months, who doesn’t have SMA – said: “Zolgensma saved his life, not a doubt about it.”
Rupert was then enrolled on a clinical trial for a lumbar puncture treatment in Milan in October 2021 – where he travelled every four months for injections for the next two years. Between his appointments, his parents began doing gruelling daily physical exercises with him to build his muscles and maintain as much strength as possible.
They also visited both NHS and private physiotherapists to give him the best shot. A special exemption was even granted allowing Rupert to continue having the drug in the UK after the trial ended. The tot had his first lumbar puncture session in the UK in January and is stronger than ever thanks to his physiotherapy. He is learning how to lie down from sitting, get on and off the loo by himself and eat on his own.
Charlie said: “We don’t compare him to other children, but he has fantastic energy, and has stayed determined and resilient. In his most recent milestone, he just completed two completely unassisted steps. We never imagined he would be able to walk – and we were told he wouldn’t live long enough anyway. But he’s smashing his milestones.”
Rupert’s parents, Charlie and George, established the charity, Rally Round Rupert, in January 2023, with a clear mission in mind: to raise awareness about spinal muscular atrophy and fund clinical research to find better treatments and ultimately a cure for this condition. They were inspired by their son’s strength and resilience in the face of adversity and wanted to make a difference in the lives of others facing similar challenges.
Since its inception, Rally Round Rupert has organised successful walking challenges, raising an impressive £180,000. These funds are being used to sponsor clinical projects with prestigious institutions such as the University of Oxford, Milan, and hospitals in London and Italy. The charity’s partnership with these institutions ensures that the funds raised are being put to good use in advancing research and improving the lives of those affected by spinal muscular atrophy.
One of the most exciting events on the horizon for Rally Round Rupert is the upcoming walk challenge planned for June 2024. This challenge will see 100 walkers taking on the Cotswold Way, covering over 100 miles, to raise both awareness and funds for the charity. This event promises to be a significant milestone in Rally Round Rupert’s journey and will undoubtedly bring the community together in support of this worthy cause.
If you want to learn more about Rupert’s story, the mission of Rally Round Rupert, and how you can get involved and support their fundraising, awareness, and storytelling goals, we encourage you to visit their website. There, you will find inspiring stories, information about upcoming events, and ways to contribute to this important cause.
Together, we can make a difference in the lives of those affected by spinal muscular atrophy. By supporting Rally Round Rupert, you are not only helping to fund vital research but also providing hope and support to families facing the challenges of this condition. Join us in making a positive impact and spreading awareness about spinal muscular atrophy. Together, we can create a brighter future for all those affected by this condition.
