Shortly after 8-year-old Zoë was born she was diagnosed with osteopathia striata with cranial sclerosis (OS-CS), a rare genetic bone dysplasia which causes motor skills developmental delay. She also uses a tracheostomy to help her breathe.
At the time, parents Britt and Adrian said they were pushed to the limit. “We’d been trying for a baby for five years and had already endured the stillbirth of one child, so when we were told about Zoë’s diagnosis everything took its toll on me and I had a bit of an emotional breakdown,” says Britt.
Fortunately, the children's hospice charity Shooting Star Chase were able to lend a hand. “Shooting Star House offered us an emergency stay and we effectively lived at the hospice for three months, while I recovered and they cared for Zoë. They also campaigned on our behalf to the local authorities to get five nights and two days of extra at-home care for Zoë so we could get some sleep and function again.”
Over the years the family has benefitted from a wide range of care from the charity’s Hamptonbased hospice, Shooting Star House – including short breaks, Sparkle day care, Hospice at Home, music therapy and counselling. Zoë was showing signs of improvement as she grew older, but the family have recently been dealt a second devastating blow, which has resulted in them relying on Shooting Star Chase all over again.
“We found out two years ago that Zoë has another rare disorder called Moyamoya, which causes restricted blood flow to the brain,” says Britt. “She gets chronic headaches and mini strokes, she’s often exhausted and has to go into hospital for pain relief. The condition also affects her educational learning and mental development – she struggles to find words and gets easily confused, so she’s gone back to using Makaton to support her communication.”
To make matters worse, Zoë’s newly diagnosed condition has an impact on her tracheostomy checkups. “Zoe has an operation every year to check her airway’s development but the Moyamoya means she’s at high risk of stroke when she’s under general anaesthetic, so this procedure cannot be done lightly. She’s come so far but now Moyamoya is holding her back. It’s devastating when your child has one incredibly rare life-threatening condition, let alone two, and you wonder what else she’ll have to contend with.
“The minute we received the latest diagnosis, our Hospice at Home nurse from Shooting Star Chase was on hand to look after Zoë so I could process the devastating news that my daughter was really sick again.
“In the past year Shooting Star Chase has proved once again to be our knight in shining armour. Short breaks at Shooting Star House mean we can have a social life, go out as a couple and just have a chance to decompress. It means everything to have some time out. And the hospice is the only place I feel 100% confident leaving Zoë, particularly now she has Moyamoya. They also took us in for an emergency stay for three weeks when some building work we were doing started compromising Zoë’s health.
“Simply put, there are no words that describe what Shooting Star Chase means to me and my family. They saved my life and my sanity, and without them I wouldn’t be here. And neither would Zoë because I wouldn’t be able to look after her. I couldn’t have made it through the last eight years without them.”
In 2015 Zoë was featured on ITV's The X Factor, as proceeds from the winner's single were used to raise funds for both Shooting Statr Chase, Together for Short Lives. You can watch the film from X Factor above, and find out more about how our work with X Factor helps raise money to support children's palliative care services across the country.