How you can help this young Derbyshire boy who has an incredibly rare and tragic illness

The parents of a seriously ill Derbyshire youngster are appealing for the public’s help so they can transform their home and help improve his life.

Tuesday, 27th August 2019, 8:35 am
Thomas Gascoyne and his family want to thank everyone who has so far supported them. Pictures contributed.

Eleven-year-old Thomas Gascoyne has been fighting a battle with an undiagnosed regressive condition since the age of six.

Although Thomas does not have an official diagnosis, his neurologist believes with 99 per cent certainty that he has a rare variant of Batten Disease, which affects the nervous system. Confirmation of this is expected in the coming months.

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Thomas Gascoyne and his family want to thank everyone who has so far supported them. Pictures contributed.

His parents, Claire and Mark Gascoyne, have now set up this online page to raise money in order to carry out improvements to their home in Coal Aston so Thomas can be included more in everyday family life.

Generous folk have so far donated nearly £20,500 to the cause.

Claire, 45, said: “Our lovely smiley son has gradually faded away to a boy who can’t talk, walk or sit unaided.

“Over the past year he has been in and out of hospital - even on Christmas Day.”

Thomas as a little boy.

Claire told how her ‘beautiful’ boy was born in March 2008.

She added: “Everything was normal when he was baby and toddler.

“As he developed he struggled with his speech and language and he had a few autistic traits.

“He was a shy boy but once he was used to you and his surroundings his personality came out.

At nursery Thomas loved counting and space.

“At nursery he loved counting and space.

“When he was four he could count to 30, knew all the planets and could recognise musical instruments by sight and sound.

“When he was six he nearly got diagnosed with Autistic Spectrum Disorder but the occupational therapist at the time said there was something not quite right with his core strength and his spacial awareness.

“From then he slowly started to regress.

Thomas and his brother Alexander in years gone by.

“He eventually stopped walking then stopped crawling and now he is unable to talk and unable sit unaided.”

Claire, who has another son, eight-year-old Alexander, added that Thomas has suffered from many seizures since 2015.

Over three years ago, the family applied for a grant which was later approved so they could make adaptions to their home - but this only covered basic alterations.

They now want to make extensive changes so Thomas can have access to the ground floor of his home and garden, enabling him to spend more time with family and friends.

The money raised from the online page will help them do this.

Speaking of the money raised so far, Claire said: “We’d like to thank everyone who’s donated.

Thomas slowly started to regress by the age of six.

“It means the world to us and this money will help us achieve our dream of ensuring Thomas can enjoy the rest of his life in a suitable family home.”

Smiling Thomas.
Thomas in Chesterfield Royal Hospitals Nightingale Ward at the end of last year.
Thomas and Alexander.
Thomas had a video telemetry EEG at Sheffield Childrens Hospital last summer.