My daughter has the same rare illness as Jesy Nelson's twins - it took 56 GP visits to get diagnosed

Mia Clark started noticing that otherwise happy and healthy tot Harper Sol Dunsford, three, developed a hand tremor and wasn't able to crawl when she was just eight months old.

The 29-year-old expressed her concerns during her child's nine-month review in June 2023 but claims she was 'fobbed off', with one doctor branding the tot 'lazy'.

However, the photographer's concerns grew when her daughter would hunch over and cry if she tried to stand her up and would 'smash' her face on the floor when attempting to crawl.

Between June 2023 and June 2024 the mum-of-one says she took Harper to see doctors 56 times because she 'knew something wasn't right' but nothing showed up on tests or an MRI.

In June 2024 Harper was diagnosed with Spinal Muscular Atrophy (SMA) type two, a rare genetic neuromuscular disorder that causes progressive weakness and muscle wasting.

Jesy Nelson, who shot to fame in Little Mix, recently revealed her eight-month-old twins Ocean Jade and Story Monroe were diagnosed with SMA type one, the most severe form.

If left untreated SMA can be fatal with many infants not living past the age of two due to respiratory failure. Despite being told Harper may never walk unassisted, intensive physio and seven doses of Spinraza, the first disease-modifying treatment for SMA, has seen her regain all lost abilities.

Mia has set up a GoFundMe page to help raise funds for Harper's expensive medical needs and hospital stays.

She now hopes her daughter will be able to walk independently one day and urges others to advocate for their children to get a quicker diagnosis.

Mia, who lives in Ramsgate, Kent, said: "I'm heartbroken for Jesy in so many ways but it's amazing that people are talking about it because it affects more than people know. It needs to be spoken about because it's not on the newborn screening.

"Harper was born a completely happy and healthy baby. It wasn't up until she was seven or eight months old that I started to notice she wasn't doing things a normal child would. She struggled to bear weight through her hips, she had a tremor through her hand and she wasn't crawling.

"I took her to her nine-month review [...] and mentioned I was worried. I was fobbed off and they said 'children do things at their own time'. That led us down the diagnosis journey because I knew something wasn't right but it actually took me a year to get Harper diagnosed.

"When things really started to ramp up was when she was 18 months she started to lose her ability to swallow and she was struggling to breathe. She never walked prior to diagnosis but she could stand while holding onto something.

"She stopped having the ability to put weight through her legs and she started to develop a bulbous knee so her legs were unable to separate. If we tried to put her in standing [position] she would just completely hunch over and cry. She's always been a really strong crawler and she lost her ability to crawl.

"She used to have falls where her arms gave way and she'd smash her face on the floor. [One doctor] said 'she's just focusing on talking and children get lazy on their mobility when they're talking'. I'm fully aware that children do things in their own time but I find it really hard that one doctor can comment on 10 minutes of witnessing a child when I'm with that child constantly and know best.

"She had quite a severe tremor in her hands and we just knew in her gut that something neurological wasn't right."

The mum was 'devastated' when a blood test came back positive for SMA in June 2024 and feared her daughter might never walk independently.

Mia said: "We were gutted. It was quite devastating because a lot of the damage had been done by that point. There was a part of me that was relieved that finally somebody was listening and it wasn't my madness but then it also sunk in the grief. You're grieving a life you thought you were going to have.

"Your whole life revolves around medical appointments and it is completely different. I didn't know what the future was going to look like and I still don't really know. They [doctors] said 'manage your expectations. She will never be able to walk and she will need aids for the rest of her life, breathing support and a strict diet'.

"It was very full-on going from what I thought was going to be a normal lifespan with a normal child to not knowing what was going to happen."

Harper has been given seven doses of Spinraza that she requires every four months as well as intensive physiotherapy. Harper got her first wheelchair in November 2024 but has now been using a walker since January 2025 and Mia hopes she will be able to walk independently one day.

Mia said: "It's been a rewarding and wonderful journey because every ability Harper has gained back feels like winning the lottery 10 times over. She's taken a few independent steps and she walks really confidently with her walker, she can stand for over a minute.

"She's gained every ability back that she lost and her swallow's better and her respiratory state is better. I can send her to nursery without worrying and have been able to go back to work because she's gaining independence every single day. I didn't think it was going to happen.

"I'm hopeful Harper will be able to walk, we're on the cusp of her taking more independent steps. I'm so grateful and I'm so proud of her because it's not easy. The treatments are the most important thing for these children and the treatments for SMA are the ground breaker in this."

Mia says it's 'super important' for public figures such as Jesy Nelson and others to speak out about the condition. Mia said: "It's super important [that Jesy's speaking out against this]. There's so many of us in this fight to keep this access to treatments and fighting for the people that have SMA. It's not normal that your child's lazy, that your child's limbs are floppy. It needs to be listened to and heard.

"With Jesy Nelson's story and every story of every child with SMA fighting for the diagnosis and having to advocate for your child is the hardest part of it. With an early diagnosis and it going on newborn screening [in future] the children would be walking and living independent lives."

You can donate to Mia's GoFundMe page here: https://www.gofundme.com/f/beautiful-harpers-journey-with-sma-type-2 [please include link]