Twins with SMA Strive for Independent Homeownership Amidst Challenges

Acquiring one’s own residence is an aspiration that can appear unattainable for many young individuals. However, for twin brothers Sam and Alex Bolton, who live with spinal muscular atrophy (SMA), the path to realizing their goal of independent living presents even greater obstacles. Their medical condition necessitates the Derby-based siblings’ use of wheelchairs, results in muscle weakness, and causes difficulties with movement. Despite medical professionals’ predictions that they would not survive beyond the age of seven, the brothers, now 19, are both pursuing a film and television degree at university. They expressed their hope to achieve independent living in the future, but highlighted that the expenses involved in making homes accessible through necessary adaptations represent a significant hurdle for them. Alex stated: “Without our benefits we are left needing to find a full-time job, which could have certain health risks for us working full days and getting tired. So it’s not a feasible option to work full-time so we rely on these benefits that aren’t sustainable for adults. When we grow up I’m hoping we don’t live together. I quite like [Sam] but not enough to live with him for that long.” Sam added: “[We have] a muscle weakening condition that puts us in wheelchairs but on a daily basis we do our best not to let it stop us. Independence in the form of our own house will be one of those key steps to living not just a normal life but an exceptional life. That’s what we hope to do.” When their landlord decided to sell their specially modified family home, they feared they would be forced to reside in a hotel until alternative accommodation could be secured. Sam recounted: “We were told our house – the one we’ve rented for 15 years – was being sold and put on the market. This period was one of the hardest of our lives, with the weight of the threat of homelessness on our shoulders every day. If this were happening to anyone else, they could find somewhere else – whether temporarily or permanently – and it would be acceptable. We were told we might be put in a hotel which doesn’t consider our needs – there aren’t many hotels anyway that can look after us for a weekend never mind until we find our new house.” Subsequently, a housing association acquired the property, enabling the family to continue their residency there. Nevertheless, this crisis underscored the potential difficulties they might encounter when seeking to own their own home. The Budget announced on Wednesday allocated £500 million to the affordable homes programme, which includes provisions for supporting home ownership for individuals with long-term disabilities. This development is encouraging for Sam and Alex, who have been actively campaigning for increased support to help people with similar conditions access the property market. David Abbey, director of MySafeHome, assists individuals with disabilities in applying for specialized mortgages that facilitate their purchase of a home. Abbey commented: “We welcome the top-up for the funding of the affordable homes programme. Obviously we’d like more because there’s a high demand for homes especially for people with disabilities. We recognise that resources are limited but we’re hopeful that a spending review in the spring of 2025 will set out the longer term of plan for affordable homes for all. [This includes] for people with disabilities who have sadly been excluded from home ownership in the past. Home is the foundation of a good life and so it’s important that people have a real choice about where they live and also the type of properties they live in.” For updates from BBC Derby, connect on Facebook, X, or Instagram. Story submissions can be sent to eastmidsnews@bbc.co.uk or through WhatsApp at 0808 100 2210. Copyright © 2024 BBC. All intellectual property rights are reserved. The BBC disclaims responsibility for the material found on external websites. Information regarding our policy on external links is available.