Parents Gary and Kelly Munden, of Terrington St Clement, are fundraising this Christmas after tragically losing their baby daughter Annabel, who was living with an extremely rare disease.
Annabel suffered from a condition called Cockayne Syndrome or CS – a very rare and potentially fatal disease passed on by a defective gene from both parents.
There are only two to three people per million in the world 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 recurrent lung infections that required regular antibiotics, steroids and inhalers.
These have become more and more common, requiring daily medication, sometimes every hour, and a home vacuum machine to keep her comfortable.
Ms Munden is now calling on the public to support East Anglia Children’s Hospices (EACH) during The Big Give, to raise vital funds to ensure other families benefit from the hospice’s bereavement services.
All donations made during this time will be matched through a fundraiser provided by major EACH supporters and partners of The Big Give.
The funds will go directly to support the charity’s bereavement services.
Annabel’s parents want to give back to the charity as their daughter has been transferred to The Nook, EACH’s hospice just outside Norwich.
After their loss, the couple wanted to spend time together as a family before returning home.
Ms Munden said: “Without the guidance, I think we would probably be sitting in our house and locking up the world.
“We would never have done anything again, so we are grateful to have the help and support of our advisor, Amy. She was priceless.
Annabel has been back and forth to the hospital throughout her life, until in June of last year she made her final trip to Queen Elizabeth Hospital.
She sadly died there at the age of five.
Ms. Munden thinks the holiday season is a particularly poignant and difficult time because Christmas was “awesome” with Annabel.
She said: “Annabel loved the tree, the pretty lights and playing with garlands, although she found it very overwhelming.
“Last year was our first without her so we made sure to do something special. It was her favorite time of year so we planted our tree early.
“Then at 4 am on Christmas morning we went to see the sunrise at Wells-next-the-Sea with our bear Annabel who holds Annabel’s ashes.
“It was so magical and as soon as we stepped 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 talked about Christmases gone by.
“It was always this time of year that we wondered if this could be our last together.
“Annabel suffered from lung infections during the winter so we always made sure we never regret anything this Christmas.
“It’s a time of year that we dread, but we create memories for Annabel, rather than Annabel, to make her proud.”
To show your support, visit the Big Give website between November 30 and December 30 and donate to EACH.