Mother of SMA Daughters Extends Support to Jesy Nelson Following Twins' Diagnosis
Imtiyaz Begum, a mother from Wolverhampton whose two daughters live with spinal muscular atrophy, has shared an emotional message of support for Little Mix star Jesy Nelson. This comes after Nelson recently revealed that her eight-month-old twins, Ocean Jade and Story Monroe, have been diagnosed with SMA type one.
The Family's Journey with Spinal Muscular Atrophy
Imtiyaz first noticed something was different with her eldest daughter, Sanah, when she was just one year old. Unlike other babies, Sanah wasn't walking and could only move by holding onto furniture with both hands. At age two, she received the devastating diagnosis of spinal muscular atrophy type two, a rare genetic condition that causes progressive muscle wasting.
"When she was diagnosed, it was too much to take in," Imtiyaz recalled. "It was really heartbreaking. I didn't know how to process everything they said. Doctors told us it was a muscle wasting condition, there was no treatment, and that she would get weaker slowly."
The 55-year-old mother described how the diagnosis led her into depression as she adapted to becoming a full-time carer for her daughter. Sanah's younger sister, Zaynab, now 25, was later diagnosed with the milder SMA type three.
Sanah's Experience Living with SMA
Now 29, Sanah lost complete mobility at age twelve following spinal surgery to address severe scoliosis. Since then, she has relied on an electric wheelchair and requires carers to visit four times daily, with her mother providing overnight care.
"Since then, I couldn't do anything myself like go to the toilet or shower," Sanah explained. "I had the mental capacity but physically it was gone. I have chronic fatigue and I crash at around 5pm. Every day looks so different in terms of pain. My life is a rollercoaster."
Despite these challenges, Sanah graduated from university where she studied film and worked as an editor and artist before her health forced her to leave her job last year. She underwent the first approved SMA treatment available on the NHS for three years but made the difficult decision to stop when side effects worsened her psoriasis.
A Message of Hope and Advocacy
Both mother and daughter have been following Jesy Nelson's journey with her twins, which has brought back emotional memories of their own experiences. They are now speaking out to highlight the crucial importance of early testing for spinal muscular atrophy.
"Watching Jesy Nelson speak has been very emotional," Imtiyaz said. "There were no tests or treatments when Sanah was diagnosed. Early testing is so important so children can live a better quality of life. If there was treatment available then, it would have made a significant difference."
Sanah added: "It's been emotional following Jesy's story. Parents have been fighting for years for early testing. Her babies are nine months old, and that's a long time for the condition to progress, so they've already lost so much. It's amazing that she's talking about it and spreading awareness."
Words of Encouragement for Jesy Nelson
Imtiyaz has a direct message for the former Little Mix singer and other parents facing similar challenges: "I want to tell Jesy and other parents of children with SMA that they've got this. Your children are amazing. They're going to do great. They're just going to need the support. If you can do it, they can do it. Stay strong and believe in yourself and believe in your children."
She continued: "They can achieve many things in life like Sanah has. I always taught her she was no different and to be independent. SMA doesn't affect your mental strength, so they'll be strong."
Sanah believes Nelson's platform could accelerate progress: "Everyone knows what SMA is now, and I think newborn screening will happen sooner because of Jesy pushing it. Her children will be amazing, and she'll be a great mum."
The family's story highlights both the challenges of living with spinal muscular atrophy and the importance of awareness, early diagnosis, and accessible treatments through the NHS.
