On 14th October Charlotte Hurst will be running in the Cardiff 1/2 Marathon. Please take the time to read her story and reasons for doing this and no matter how small a donation, every penny counts. Please visit Charlotte’s Donation Page.
In the early hours of Christmas Eve (2010), my beautiful and very precious cousin Grace, just 6yrs, flew to heaven to become a Christmas Angel. Grace touched the hearts of everybody who met her and will be forever in our hearts.Grace suffered from Rett Syndrome, a rare neurological development disorder which affects one in 10,000 to 15,000 female births. Grace was on the very severe spectrum of Rett Syndrome at the very young age of 4. Doctors described her condition as being severely life threatening and terminal.
Grace was born in October 2004. She was a placid baby, difficult to feed but seemed perfect in every other way. However at around 5 months old she became constantly under the weather and her development seemed to be delayed. Grace was referred to a paediatrician for tests and just after Grace was 2, we were given a confirmed diagnosis of Rett Syndrome.
Grace became rapidly unstable and required endless visits to Blackpool Victoria Hospital. She needed intravenous antibiotics every 2 to 3 weeks and was admitted to intensive care to fight for her life on a few occasions. Her respiratory system become so vulnerable she had to wear a gel mask that provided her with humidified ventilation in order to survive day to day. Grace required 24 hour care from her doating family and a team of specialist carers and nurses.
From the age of 2, Grace attended Brian House Children’s hospice. It was a safe haven that had a truly amazing team of care doctors and nursing staff that allowed Grace’s family not to worry about daily household chores or whether Grace’s care rota was fore filled. The hospice allows families to play, paint, read and grab every precious minute of their child’s happiness and store it in their hearts forever. Brian House gave Grace her sparkle back as being a little girl who was segregated from society, only had her family and careers for interaction. She never did have much energy but this place filled her life with joy, love and laughter. The staff would wheel her around in her bed at brew time so she could join in the fun and giggle endlessly with them.
As doctors predicted Grace continued to deteriorate and around 5 years she became very poorly. She had stopped going to school and spent most of her time in her bed and only went from home to the hospital or Brian House. It wasn’t until this time that her family realised how much they needed Brain House who became their lifeline.
On the 7th October 2010 Grace had a turn for the worst and fought to stay alive. She was transferred to Brain House immediately for end of life care. However a miracle happened and Grace was given a second chance and regained consciousness. It was like she had a new lease of life, so alert, so brave; she had turned into Amazing Grace.
Grace’s family moved into Brian House for 10 weeks until Grace became very unwell again and her family knew Grace had finally come to the end of her Rett Syndrome journey. Grace’s mummy, daddy and sister decided to take her home to fall asleep in her own bed. Grace slowly passed away on Christmas Eve morning and became our ever precious Christmas Angel.
The sheer dedication, love and sincere heartfelt sorrow that the staff of Brian House shared on Grace’s journey, are hard to put into words. Without Team Brian House angel Grace and other children like her would not have had such a fulfilled life and that’s why I’m raising money to support such a wonderful place.
Lots of love and angel kisses
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Sleep tight sleeping beauty, our Amazing Grace.