The collection celebrates Laura’s daughter Elisabeth and her story with Spinal Muscular Atrophy type 1, helping to support the hospital that saved her life.
Laura and her husband felt as prepared for parenthood as they could possibly be when they welcomed Elisabeth in August 2024, but when she was just two days old, Elisabeth began having instances of turning blue and looking as if she wasn’t getting enough oxygen.
At 12 weeks old, Elisabeth had her first instance of choking on excess mucus, whilst asleep on her back, and Laura had to call an ambulance. At their local hospital, Elisabeth’s observations were reading as normal, so the family was sent home.
This began a continuous back and forth between Laura and their GP, trying to find answers. Eventually, Elisabeth was referred to the paediatric department of their local hospital. By this time, Elisabeth was five months old and hadn’t reached any of the expected physical milestones. She had lost use of her legs, was incredibly floppy, and was showing signs of regression.
The paediatric team referred her for physio, but to avoid wait times, Laura took Elisabeth to a private physiotherapist.
Laura recalls: “A private physio told us that Elisabeth required genetic testing. Elisabeth had become worryingly weak by this stage, so we took her to a private specialist who told us that she believed our baby had Spinal Muscular Atrophy (SMA) Type 1. Our world as we knew it ended in that room. I sobbed, became physically unwell and travelled home in a daze.
“With Sheffield Children’s Hospital being a specialist SMA centre, we were given an appointment there just days after seeing the specialist. That’s where our journey with SMA truly began.”
SMA Type 1 is a rare and severe genetic condition, causing muscle weakness that gets worse as the baby grows. Children with SMA Type 1 typically show symptoms within their first six months, and the muscle weakness effects their movement, breathing, and swallowing.
Without treatment the symptoms progress quickly, and most children don’t live past two years old.
Sheffield Children’s NHS Foundation Trust is a national leader in specialist children’s healthcare and a Neuromuscular Centre of Excellence (as awarded by Muscular Dystrophy UK), providing expert care from a team of dedicated clinicians for children like Elisabeth. Sheffield Children’s is also one of only four centres in the UK providing a gene therapy called Zolgensma® to children with the progressive muscle disorder.
Laura remembers her first experience with the team: “To walk through those doors, that very first time, I will never forget it. The fact that there was more than one member of staff, that there was this team of people with different specialisms they could bring to the table. I’d never experienced anything like that before, and they were all there for my baby.
“They were so gentle and kind and, most importantly, incredibly knowledgeable. They treated us as if it were life and death from pretty much the second we walked in. They saved a life, and while saving her life, they very professionally gave my husband and me a lovely hug at the same time.”
Life hasn’t been easy for the family since diagnosis, and at times they have had to grieve the life they had expected to have. Following a two week stay at Sheffield Children’s, when they returned home, they had to adapt to a whole new routine of tube feeding, physical therapies and specialist equipment to create the best routine for Elisabeth.
Luckily, Elisabeth is an absolute treasure, and the family know that the staff at Sheffield Children’s Hospital are on hand, should they need them.
Laura shares her experiences being an SMA Type 1 mum on social media, and across various platforms has over 450k followers, including clothing brand Percy & Nell.
Percy & Nell is an independent UK business dedicated to creating positive, feel-good clothing. After seeing Laura’s story on social media, the brand approached her about doing a clothing collaboration with profits going to a charity of her choosing.
After her experiences at the hospital, Laura was delighted to support Sheffield Children’s Hospital Charity through this partnership.
The charity funds Sheffield Children’s to deliver life-changing care, comfort and new ideas that make all the difference for patients and families at Sheffield Children’s.
Laura said: “Unless you’ve had a team of special people save your baby’s life, I think you could read our story and not fully appreciate how vital the hospital and its staff are. Supporting the hospital truly means supporting the babies, toddlers, children and families who walk through its doors in need of help, so it’s just hugely important that this hospital can continue offering the incredible care it does. My baby’s is not the first life they have saved, and she certainly won’t be the last.”
The collection is a true collaboration with designs that are really personal to Laura and Elisabeth, including the word ‘warrior’ which is often used to describe children with SMA Type 1.
Laura said: “Anyone who chooses to support Sheffield Children’s Hospital are making a true difference to the lives of people who are scared, perhaps in pain, maybe desperately unwell or in need of vital treatments. You are helping families during some of the worst times of their life; that’s something for you to be incredibly proud of and that we’re incredibly grateful for. Thank you, with love from the Amies family.”
