Kaisha always knew she was different to her schoolmates, but it wasn’t until she was ten years old doctors finally gave her family the answers they’d been searching for. Since then she’s faced the taunts of her peers, said goodbye to her mother and struggled to come to terms with a degenerative condition that affects every aspect of her life. Now in her 21st year, Kaisha reflects on the joy her “second family” at Bluebell Wood have brought her, and looks forward to an exciting new chapter in 2021.

“Everyone just thought I was lazy when I was younger,” said Kaisha.

“My condition started off with issues around my balance and how I was walking. It didn’t happen quickly and just got worse over time.”

When she was ten-years-old, a series of tests revealed she had a rare genetic condition that causes progressive nervous system damage and movement problems called Friedreich Ataxia.

“It turned my world upside down. I was going to secondary school that year too so it felt like terrible timing.”

Secondary school was a challenging time for Kaisha as her condition deteriorated, with her schoolmates often less than sympathetic to her plight. Then, when she was just 15 years old, her mum passed away.

“It was totally unexpected and we were in complete shock. My mum had been with me through it all, and was my carer as well as my mum. I miss her terribly and I always will.”

The devastating blow saw Kaisha’s condition worsen further still. But when she was at her lowest, she found a light at the end of the tunnel.

“I was really struggling so I went for a visit to Bluebell Wood and I absolutely loved it. Everyone was so nice.

“The staff are the best and they make me laugh all the time. It’s like having a second family.”

Kaisha has spent many happy days visiting Bluebell Wood for respite care and making friends in the hospice’s youth group, and is a familiar face among staff and volunteers.

The charity’s Family Support team are now helping her transition into adult care services. With a helping hand from the hospice’s Transition Co-ordinator Jules Campbell, Kaisha’s now moved into her very own flat in an assisted living complex.

“2020 was such a horrible year so I really can’t wait for all that 2021 has to bring. I’m so excited to move into my own place, cook my own meals and have my own space.

“I’ll be cooking my favourite, Spaghetti Bolognaise, for my first meal. I can’t wait!”

Bluebell Wood is one of the first children’s hospices to employ a full-time transition co-ordinator to help young adults with life-shortening conditions into the often daunting world of adult services.

“My role is to be an advocate for young people and their families and to help empower them and build confidence so they’re able to make their own decisions,” said Jules.

“I work with families to put them at ease as they begin to move away from services that have been such an important part of their lives.

“The transition into adulthood and all the decisions that come with it can be overwhelming at the best of times so it’s very important that we’re here to guide people.”

Jules and the Bluebell Wood team are incredibly proud of Kaisha for all she’s achieved.

“I’m over the moon for her,” Jules added.

“Kaisha’s been through so much but is so resilient and has a wicked sense of humour. She really is inspirational and I have no doubt that by sharing her story she’ll inspire others.

“She knows exactly what she wants, but she just needs someone to help guide her. So I’m very proud and excited that she’s now moving into her new home in what’s shaping up to be a year full of new beginnings.

“Kaisha’s story shows how we’re there for the families in our care every step of the way, and it’s a privilege to a be a part of something that really does change lives.”

If you've been inspired by Kaisha's story, you can help other young people like her by making a donation here