52 Lives

#29 Jessica and Nicole

Request: Gifts for the girls

Today, we’re spreading some Christmas kindness to sisters from Newcastle, who both have a degenerative illness.

Jessica (4) and Nicole (7) both have Batten disease. It is a devastating illness. Children with Battens lose the ability to walk, talk, see and eat. It is life limiting – most children with Battens are not expected to live past the age of 12.

Nicole was diagnosed when she was 4 years old, after she started having speech problems, seizures and falls.

“We were told they had the test results back and to make sure we came alone without the children. We got to hospital to be met by our paediatrician, then a consultant neurologist and a nurse. We knew it must be bad if all three were there. Then they started the conversation, explaining the details of what the test was looking for, lots of medical explanations which we probably can’t even remember now, she had Batten Disease. Then they said, it was very serious, to which we replied, how serious is serious? Very serious we were told. So we asked the only question we could think of to try and determine how serious is serious, which was “what is the life expectancy?”…..”Children with this condition are not expected to live into their teens”.

"We then found out there was no treatment, no cure, nothing. Our world collapsed in those few seconds.”

Battens is genetic, so they also tested Nicole’s older brother and her little sister. Sadly, her little sister Jessica also has the disease.

When we asked the family what we could do to help, they said they are in need of sensory items for the children.

With funds raised by Gala Bingo, we are happy to be able to provide every sensory item the girls need. We’re also going to send Christmas gifts to the entire family – the girls, their parents (Gail and Matthew) and their brother Louis. We know it won’t change their circumstances but we hope it helps to put smiles on their faces this Christmas.