Friends shave hair for hospice in memory of West Lothian 'miracle' toddler who died from childhood dementia

When little Mirryn Cunningham was born her mum did not expect to be saying goodbye only two years later.

Vicky Cunningham and Mirryn.

However the toddler, who had a rare form of childhood dementia, died peacefully in her mother’s arms earlier this year.

Vicky Cunningham, 31, from Uphall said she was “moved” by the fundraising efforts of her friends Elaine Robertson, 51 and Mandy Elizabeth, 43.

Vicky's friends.

The pair shaved off their locks at an event in Gladstones Pub in Leith to raise cash for the hospice Vicky described as a “lifeboat of hope” throughout the last months of Mirryn’s life.

Batten Disease

In 2017, Mirryn was diagnosed with Batten disease, a rare chromosome disorder commonly known as childhood dementia, leaving her unable to eat by herself, walk or see properly.

With no known cure for this condition, the treatment focuses on making the child comfortable and giving the family time to make precious memories.

Vicky said: “I have known Elaine and Mandy for ages, we went to the football together as we are all big Hibs fans.

“They have been fantastic with the way they are still supporting Mirryn.

“They really wanted to do something to mark her birthday and asked me if it would be okay if they planned a charity shave. I, of course, said yes.”

Vicky added she was initially hesitant about the idea of a hospice but it was nothing like she expected it to be.

She said: “As a mum, it is really hard to hear that your baby won’t be getting better but the team at Rachel’s House were incredible and helped us make memories with what time we did have left.

“Without the hospice Mirryn would have died a painful death in hospital, instead she got to go to sleep peacefully in my arms, I can’t thank them enough for that.

“Before I went I expected to walk in and see dying children everywhere but it was nothing like that.

“You walk in and see laughing children living life, and to me that was amazing.”

Fiona Leslie, community fundraiser for Children’s Hospices Across Scotland (CHAS), said: “We give thanks to Vicky and her loving network of friends for fundraising for the benefit of fellow families who use CHAS services.

“Their fundraising efforts are as tireless as they are inventive.”