Batten Disease: Parents to celebrate 'last Christmas' with daughter

Parents of a seven-year-old with a rare disease have said they are aware that this Christmas is "probably going to be the last one" with her.

Hayley and Dave Clarke's daughter Addy has a rare type of Batten Disease, also known as childhood dementia.

The family, from Swindon, are being supported by children's hospice Julia's House in Devizes.

Mrs Clarke said the illness - which affects only about 30 in the UK - "felt worse than the worst-case scenario".

She said the family "don't know what's around the corner".

"We don't know what next month will hold, what next year will hold," she said.

"So we are just trying to live and make the most of what's in our lap at this point."

They have been telling their story as part of the Christmas appeal for the hospice charity, which Mrs Clarke said had been there for the family "since almost the beginning".

She said: "They have walked through a journey with us where we have been losing things with Addy. They've been there as Addy has stopped walking by herself, stopped eating."

Mr Clarke said he can still remember "the initial shock" of hearing his daughter's diagnosis in the hospital.

"I remember going back home and I couldn't look at her, because within those words everything changed," he said.

They found out that Addy had Batten disease when she was four years old, after she began to have seizures.  

Mrs Clarke added: "The disease steals every skill the children have ever learned.

"In effect, her brain is shrinking from the body's ineffectiveness of being able to get rid of cell waste.

"I remember my husband dissolving into tears and saying, 'We're going to have to bury our daughter.'" 

The hospice allows Addy's parents to have some respite, and also helps her older brother Samuel.

"When you feel so worn thin from caring round-the-clock for your seriously-ill child, just to have a few hours to sleep or have time as a couple is such a blessing," Mrs Clarke said. 

Explaining that Addy "loves" Christmas, Mrs Clarke added: "I think looking back, we know we will have done all that we can to make her happy and enjoy what she can when she can."