“It used to be fatal before the age of two,” Wendy explains. “Thankfully, the NHS introduced gene therapy in 2020, which Fenn was able to receive just before she turned seven months. But because she was diagnosed quite late, a lot of the damage was already done. The therapy stops things from getting worse, but it can’t repair what’s already been broken.”
When Wendy’s daughter Fenn was born, she seemed like any other happy, healthy baby. But by the time she was a few months old, Wendy and her husband Harry began to notice that something wasn’t quite right. Fenn wasn’t lifting her head or meeting her milestones.
After several visits to their GP and months of waiting for specialist appointments, they finally received the diagnosis no parent ever wants to hear: Fenn had Spinal Muscular Atrophy (SMA), a rare genetic condition that affects muscle movement and strength.
Fenn’s first year was incredibly tough. She needed ongoing respiratory support, tube feeding, and careful physiotherapy routines to keep her muscles as strong as possible. Wendy describes those early months as “a blur of medical appointments, equipment, and fear.” But through it all, Fenn’s calm and gentle personality shone through.
“Everyone describes her as very chill,” Wendy says with a smile. “But she’s also got this cheeky side that’s starting to come out. She loves music, singing, and she’s becoming a bit of a menace in her little wheelchair!”
How Jessie May Helps
Fenn was referred to Jessie May in early 2024, shortly after turning one. Her family first met nurse Lois, and since then, their regular visits have become an important part of family life.
“We see them at least once a month, usually Lois and Lizzie,” says Wendy. “It’s been such a relief having someone come to the house who really understands Fenn’s medical needs, but also just treats her like a child who deserves to play and have fun.”
During Jessie May visits, Wendy can take a rare moment for herself; to do yoga, go out for lunch with husband Harry, or even attend appointments that are difficult to manage with Fenn’s care needs.
“It’s given me the chance to relax and trust someone else with her,” Wendy shares. “Before Jessie May, I couldn’t leave her with anyone. I used to write pages of notes for anyone who might watch her, but now I feel comfortable knowing they’ve got it covered.”
One moment that stands out for Wendy was during the summer:
“I looked out into the garden and saw Fenn fast asleep in Lois’s lap. Lois was just gently cradling her. It was such a sweet moment – it really showed how much Fenn trusts them.”
Wendy says that having Jessie May nurses visit at home makes all the difference. “When we go out to one of the other hospices to support us, it’s a big effort with packing and travel. But when Jessie May comes here, it’s easy. They bring joy right into our home.”
Looking Ahead to Christmas
This Christmas will be a special one for the family. Wendy’s parents are visiting from the US for the first time, and they’re excited to experience a traditional British Christmas together – complete with mince pies, Christmas markets, and hopefully a pantomime.
It will be Fenn’s third Christmas, and each one so far has been unique. Her first was spent mostly in hospital around the time of her treatment, while last year was a quieter celebration with Harry’s family.
“This year feels like a fresh start,” Wendy says. “We’re moving house soon, and my parents will be here, so we’re just hoping to make lots of happy memories.”
They’re also looking forward to attending Jessie May’s Christmas Party for the first time.
