Derby twins say "spinal muscular atrophy does not define us"
The Derby family have been speaking out following the diagnosis of Little Mix star, Jesy Nelson's twins
Derby twins Sam and Alex Bolton have been sharing what it's like to live with spinal muscular atrophy (SMA) from a young age, but want to highlight how it doesn't hold them back.
It comes in light of Little Mix star, Jesy Nelson revealing how her baby twins have type one of the condition. She posted earlier this week on social media saying:
"I will continue to shout from the rooftops about this. It’s so important to me to use my platform to share this message and help raise awareness. I’m currently running a petition to add SMA to the newborn heel prick test in the UK, which is under review and I’ll keep you updated with any progress. I just want to say thank you so much for all the support over the last few days since sharing my update.
"It’s honestly been so overwhelming, and I truly appreciate every kind message, so thank you from the bottom of my heart."
SMA is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms.
For Sam and Alex, it impacts their ability to walk, lung capacity, and fine motor skills but despite its challenges, the brothers and their family have chosen to focus on gratitude and positivity, celebrating milestones and striving towards their goals:
"Mindset proves everything. Physical limitations may exist, but the attitude we develop is what keeps us moving forward."
The twins, now 20 years old, were initially given a bleak prognosis by doctors, who said they might not live past the age of seven. However, they continue to defy expectations, celebrating their achievements and planning for the future, including continuing their studies and aiming for postgraduate education.
Their mother, Sarah, has also shared how raising twins with SMA brought both challenges and gratitude:
"We appreciate every ounce of strength and health. It’s about focusing on the positives and encouraging what they can do."
She reflected on how advocacy, awareness, and treatment developments over the years make life more supportive for families affected by SMA today.
The impact of awareness
Families living with SMA face hurdles, but increasing awareness is paving the way for better understanding and support. Celebrities like Jesy, speaking about this has raised awareness and highlighted calls for newborn screenings, treatments, and the realities of life with SMA. Sarah expressed hope that this visibility would bring comfort and understanding to others:
"It’s overwhelming at diagnosis, but the raised awareness shows there’s hope."
The family credited SMA Support UK for its role in creating community connections and fostering support from diagnosis onwards. Sarah recommended resources like the charity’s website and the ‘Living with SMA’ podcast for helpful insights from those with first-hand experience.
They further emphasized the importance of normalizing SMA and broadening public perspectives, with Alex stating, "SMA doesn’t define us. We’re just normal people who happen to be in wheelchairs."
Celebrating milestones
Sam and Alex turn 21 later this year, marking three times the age they were predicted to survive. Reflecting on this milestone, they say it underscores their resilience and determination. Sarah highlighted their ability to not only survive but thrive, adding,
"Sam and Alex have achieved their goals despite physical limitations, adapting and living fulfilling lives."
The twins shared how their outlook on life goes beyond their condition:
"We know we’re going to work hard to achieve our dreams,” said Alex. "It’s all about mindset."