skip_previous play_arrow skip_next
00:00 00:00
  • cover play_arrow

    KL1 Radio Local Radio for West Norfolk

Local News

Couple who lost daughter to ‘very rare’ disorder show support for EACH

todayNovember 30, 2021 14

share close

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.

Kelly, Gary and Annabel together
Kelly, Gary and Annabel together

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.

Kelly, Gary and Annabel together
Kelly, Gary and Annabel together

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.

Kelly and Gary
Kelly and Gary

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.”

To show your support, visit the Big Give website between 30 th November 30 December 7 and make your donation to EACH.

Our West Norfolk news is brought to you by the Lynn News, local and trusted, download the Lynn News app

Written by: admin

Rate it

Previous post


Jack Dorseys exit as Twitter CEO not totally unexpected

The company's co-founder has confirmed he'll leave by spring next year Jack Dorsey’s resignation as Twitter boss is “surprising, but not totally unexpected”, according to one industry expert. On Monday, the Twitter co-founder and chief executive confirmed he was stepping down and would leave the company by spring 2022, saying it was “finally time for me to leave”. It brings to an end a turbulent relationship with the company – […]

todayNovember 30, 2021 21