Jesy Nelson is celebrating a significant milestone for one of her twin daughters as the family navigates life with a rare muscle-wasting condition . The former Little Mix singer shared a photograph on Instagram showing her daughter sitting upright in her wheelchair, a moment of pride after a challenging year .

The 35-year-old singer revealed in January that her one-year-old twins, Ocean and Story, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1 . This rare genetic condition affects motor neuron cells in the spinal cord, leading to progressive muscle weakness and wasting .

'She looks like such a big girl'

Accompanying the photo on Instagram, Nelson wrote about the touching moment, noting her daughter appeared like a "big girl with no tube on her face and sitting up right in her chair" . The milestone holds particular significance given that Type 1 SMA typically means sufferers cannot sit independently .

Due to a late diagnosis, the twins face significant challenges . They are unlikely to be able to walk and require specialist equipment, including breathing support at night and feeding tubes, as part of their round-the-clock care . Their treatment involves regular physiotherapy and visits to Great Ormond Street Hospital .

Campaigning for Change

The milestone update follows Nelson's passionate advocacy work. Last month, she attended a parliamentary debate on rolling out newborn screening for SMA across England, describing herself as "heartbroken and outraged" by the outcome . Currently, only 72% of the country will have access to newborn screening when it begins in October, leaving 28% without coverage .

Nelson launched a petition that gained more than 150,000 signatures, prompting the parliamentary debate . She has since become a patron of SMA UK and has met with political leaders to discuss the life-changing impact of early detection . Her advocacy work has also been featured in her upcoming Amazon Prime documentary, "Life Changing," which is set for release on July 17 .

Nelson has previously shared other heartwarming milestones, including one of her daughters saying "Muma" for the first time and the twins reaching their first birthday . Despite the challenges, the singer has described her daughters as the "strongest most resilient little fighters," expressing her determination to keep fighting for better outcomes for all children affected by SMA .