The family of a young boy with a rare condition is continuing to raise awareness and make as many memories as possible whilst he is still able to see, remember and walk.
Lucas Henderson, five, from Breightmet, was only diagnosed with the degenerative CLN2 Batten disease around 14 weeks ago, and his dad Ian says it has “completely changed” their life.
After previously setting up a GoFundMe to raise money towards a dream holiday in Disney World Florida, Ian’s work colleagues and Lucas’s school have also come together to help the family.
The family now have most of the money needed to create magical moments in Florida after Ian’s work colleagues from Van Leeuwen helped raise the funds.
Ian said: “The whole point was to try and raise as much money as possible to give Lucas some good memories with his siblings before his eyesight goes.
“Everyone has rallied around with what they could and shared it on Linkedln and social media.”
Although Lucas has been unable to attend his school – SS Osmund and Andrews RC Primary School– since his diagnosis, Ian says the school have continued to be supportive, and also helped to raise money for Batten Disease Family Association.
Ian added: “The school did a dress down day and asked for a £1 donation or what they could give.
“It’s massively helped us as a family.”
Ian is determined to raise awareness because he says that the sooner the disease is picked up “the better quality of life they can have”.
He added: “If it had been picked up or he had been tested at the time it wouldn’t have reversed anything with the treatment, but it would stop him losing a portion of his eyesight and slow it down.
“Lucas is the driver for raising awareness.
“Even if one child gets diagnosed at an early age it means they can lead a normal life and it’s all worth it.”
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.
Everyone involved in the fundraising efforts wore orange, which symbolises the condition.
The family will need to adapt their home and make some changes to accommodate to Lucas’s needs, but Ian says this is a challenge because of the family renting at the moment.
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.
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