Charlotte Lee calls daughter Gracie her snow baby. Born in January 2009 following a healthy pregnancy, Gracie’s arrival was a few months after young Sheffield mum Charlotte had received the surprise but welcome news that she was expecting.

In her early years Gracie was just like any other child, full of life and energy. But at three, Gracie had some developmental issues, including walking in a ‘funny way’, according to Charlotte. Then a seemingly-minor accident one day led to a discovery. Charlotte explains:

“Gracie was bouncing on a settee like any other three year old when she fell and hit her head and then wouldn’t stand up and walk. After two days we took her to A&E where she was x-rayed and had blood tests but nothing was found. A week later Gracie was seen by a paediatrician, who referred her for an MRI scan.”

Doctors discovered that Gracie had the very rare condition of Leukodystrophy, a life-limiting condition that comes in many different types. Gracie underwent a DNA test, muscle biopsies and visited a specialist in Birmingham, who told Charlotte that Gracie’s condition involved vanishing white matter in her brain that was causing her movement problem.

Charlotte said: “At this stage Gracie couldn’t walk unaided but everything else seemed stable. Finding out that she had an untreatable, life-limiting condition was just horrendous.”

In December 2013, four year old Gracie was admitted to hospital where she was given a feeding tube and a
wheelchair because she could not stand up and had been refusing food. Although things improved for a while, Gracie started to have seizures at the end of 2015. Charlotte said: “We had got used to Gracie’s condition but
the seizures showed that things weren’t good. She was in and out of hospital all the time. It felt like we practically lived there.”

After Gracie had fallen into a coma state twice in one year, doctors suggested the family look at Bluebell Wood Children’s Hospice. Charlotte said: “The thought of a children’s hospice was upsetting. It made me think they didn’t hold out a lot of hope for Gracie. But when we came here I could see it’s a place to enjoy spending time, where you can make the most of every day. Our first summer here was a real gift.”

Like many families, the support Charlotte and Gracie receive from Bluebell Wood isn’t just at the hospice, but also in their own home: “The Bluebell Wood doctor comes to us every two weeks and can talk on the phone when we need them. Gracie is absolutely in love with George, the hospice mascot and she really enjoys music therapy, crafting and getting the toys out. Before we came here, Gracie couldn’t hold herself up, hold a paintbrush or get on a roundabout, but here she has found a way to do these things differently.

“Our house feels like a care home and every day is a military operation. Gracie needs constant care and medicines throughout the day. Coming to Bluebell Wood is like a holiday. It’s lovely being able to relax while the Care Team take Gracie round the gardens or play with her. I’ve also been seeing Margaret, a volunteer counsellor at Bluebell Wood, who is a great support. Life for families and children facing life-limiting conditions can be very lonely, but a place like Bluebell Wood takes that away and gives us the chance to have fun and enjoy our time together.”

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