Terrington St Clement couple who lost their little girl with Cockayne Syndrome call on public to support EACH's Big Give Christmas Challenge
Parents Gary and Kelly Munden, from Terrington St Clement, are raising money this Christmas after tragically losing their little girl Annabel, who lived with an extremely rare condition.
Annabel had a condition called Cockayne Syndrome or CS - a very rare and life-threatening condition passed on through a faulty gene from both parents.
There are only two to three people per million worldwide with CS. There are three subtypes and Annabel had type two, which is the most severe.
The five-year-old had a number of complex care needs. She was tube-fed and suffered from severe reflux, for which she needed medication three times a day.
Annabel had hearing loss in both ears, cataracts in both eyes and recurring chest infections which required regular antibiotics, steroids and inhalers.
These became more and more frequent, needing daily, sometimes hourly medication and a home suction machine to keep her comfortable.
Mrs Munden is now calling on the public to support East Anglia's Children's Hospices (EACH) during The Big Give, in order to raise vital funds to ensure other families benefit from the hospice’s bereavement services.
All donations made during that time will be doubled thanks to a pot of funds provided by key EACH supporters and partners of The Big Give.
Funds will go directly to supporting the charity’s bereavement services.
Annabel's parents want to give back to the charity after their daughter was transferred to The Nook, EACH’s hospice just outside of Norwich.
After their loss the couple wanted to spend time together as a family before returning home.
Mrs Munden said: “Without having counselling, I think we probably would have sat in our house and locked the world away.
“We’d never have done anything again so were thankful to have the help and support of our councillor, Amy. She was invaluable.”
Annabel was in and out of hospital throughout her life, until in June of last year she made her final trip to the Queen Elizabeth Hospital.
She sadly died there at just five years old.
Mrs Munden thinks the festive period is a particularly poignant and challenging time because Christmas was “awesome” with Annabel.
She said: “Annabel loved the tree, the pretty lights and playing with tinsel, although she found it very overwhelming.
“Last year was our first without her so we made sure we did something special. It was her favourite time of year so we put our tree up early.
“Then, at 4am on Christmas morning, we went and saw the sunrise at Wells-next-the-Sea with our Annabel bear that holds Annabel's ashes.
“It was so magical and as soon as we set foot outside, the snow fell. It was perfect and we thought it was Annabel's way of telling us she was with us.
"We sat in the car, had a few tears and spoke about Christmases past.
“It was always this time of year that we questioned whether this could be our last together.
“Annabel suffered with chest infections during the winter so we always made sure we never regretted anything over Christmas.
"It's a time of year we dread but we make memories for Annabel, instead of with Annabel, to make her proud.”