Bolton family call for trials into CLN2 Batten disease

And they are hoping the people of Bolton will back their call by signing a petition.

The Bolton News has previously reported how Lucas Henderson, from Breightmet, was diagnosed with the degenerative CLN2 Batten disease in March.

The deadly and aggressive disease has affected Lucas’s mobility, speech, and cognitive functions.

He continues to have seizures, and his eyesight is at one of the worst stages, which could result in blindness.

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Lucas at Bolton Wanderers' Stadium with his dad Ian (Image: Public)

Around six months ago Lucas was able to count 10, but following the diagnosis he is unable to get past two.

The family were hoping that Lucas would be eligible for the 'ground-breaking trials' which dad says has shown remarkable results in others with the condition.

Dad, Ian said: “I can’t wrap my head around why they would stop the trials given the results.

“But now the trials have been taken away, there is no future and no plans.

“Before we had hope because of these trials, and now it’s just a long-drawn-out death.

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

Ian says that there were two trials that had proved to be successful, including one for the cognitive functions, and the other to improve eyesight for children affected by the condition.

Ian added: “We just had the best and promising six-month results, showing that a cure was possible.

“We were able to think positive and think forward because we knew a cure was round the corner.

“Because of his age he would have been eligible if the trials went mainstream, but we feel like we are back at square one, where he has a life-limiting, terminal disease.

“Because everything has ended, we know his days are numbered.

“It was the biggest kick.

“It’s such a deadly and aggressive disease, you don’t have time to mess around.

“If you see something working you use it, because the alternative is a slow death.”

Ian says that during one of the trials a child in Brazil’s cognitive functions improved, and they were able to retain information, without forgetting it, their speech came on, they had less seizures, and they were able to go longer without infusions.

A child in the UK has also taken part in the trials to improve eyesight, and Ian says that both trials have shown “overwhelmingly positive” results.

Ian explained that although Lucas was not eligible for the eye trials, he would of potentially be eligible later down the line, including the cognitive function trials, if they were expanded.

Lucas currently undergoes infusions every two weeks, with enzyme treatment which can reduce the effects of the disease by roughly 80 per cent, which only slows down the effects.

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

Now Lucas’s mum Stacey Henderson has set up a petition to urge relevant stakeholders and organizations to accelerate funding for CLN2 Battens Disease cure trials.

She said: “Help us save my beautiful boy and all other precious children affected by this cruel disease.”

Click here (www.change.org/p/accelerate-funding-for-cln2-battens-disease-cure-trials) for the petition to help support the family on their journey.

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.