Bolton: Family to create memories CLN2 Batten disease

Lucas Henderson, five, from Breightmet, was only diagnosed with CLN2 Batten disease around nine weeks ago, and his dad Ian says it has “completely changed” their life.

The degenerative genetic condition is so rare that it only affects between 30 to 50 children in the UK.

Ian says that they were told by doctors that his eyesight would continue to deteriorate to the point where he will become blind in the next six to 12 months.

And now a fundraiser has been set up on behalf of the family so that they can share as many memories as possible that Lucas can still remember, even after his eyesight has become worse.

Ian said: “I just want to experience as many magical moments as possible.

“I want his brothers and sisters to enjoy these moments with him too.

“I thought I had two-three years, which was the plan.

“It’s all very rushed and everything is up in the air, and it’s completely changed life.

“If his enzyme replacement therapy works and he retains his memories, even if he goes blind, he will have something to remember.”

Ian says that the family knew for a couple of years that he wasn’t developing at the same rate as his peers.

Ian and Stacey had gone through numerous tests, and doctors previously thought it was global development delay following lockdown, or epilepsy as a result of the seizures.

He said: “He wasn’t developing at the same rate as his peers and his speech never came on.

“Fortunately for us the enzyme treatment which can reduce the effects of the disease by roughly 80 per cent, which slows it down.

“Untreated children die between the ages of eight and twelve.”

Some of the symptoms include seizures frequent falls, unable to feed orally, and blindness to name a few.

It has meant that his mum had to leave her job to provide care for Lucas, while Ian still works full time.

His brother Callum, 14, is old enough to understand but it will take some time to share this with his sister Madeline, seven.

Ian said: “We are back and forth to Manchester every two weeks where he has fluids infused into his brain via an implanted device on his chest, where he is sedated for five hours.

“He has no comprehension of what’s going on.

“We had never even heard of this until nine weeks ago and its so rare, and we have been told there is no one else in Bolton with it.”

Although Ian says that the future is uncertain, he still wants to make the most of the next few months, where he already has Lapland booked, and wants to go to Disneyland with Lucas and the family.

He said: “I don’t know what the future holds and we are just taking things day by day.

“We have good days and bad days.

“His good days are very few and far between at the moment.”

Ian says that he believes early diagnosis is key and that tests should be carried out when baby’s have a heel prick at birth.

The family will also need to adapt their home in the future to include a washroom to support him, as well as additional equipment, wheelchairs, and travelling to appointments.

Ian added “We were unsure of setting up a GoFundMe because as soon as we do that it makes it real, knowing I have got so little time to do anything.

“But I hope it will help.”

To help support the family click here (www.gofundme.com/f/lucas-henderson-childs-batten-disease).

If you have a story and something you would like to highlight in the community, please email me at jasmine.jackson@newsquest.co.uk or DM me on Twitter @JournoJasmine.