We're watching our boy fade before our eyes

SMILING, laughing and full of life, Bryn Hitchcock was like any other toddler.

He had started crawling at nine months, walking at 13 months, and he loved nothing more than playing with his mum Rhianon, dad Tom, and older brothers Aidan and Morgan.

But when he reached 18 months, his parents noticed his speech wasn’t developing normally.

At three-years-old he became clumsy and started falling over a lot. He also started suffering from epileptic fits and went for numerous scans.

Bryn was diagnosed with epilepsy and speech delay, but he continued having further tests as his seizures were increasing despite his medication.

By the time he started at Even Swindon Primary School at four-years-old he was using a wheelchair.

And just two weeks into his first term at school, doctors gave him a life-changing diagnosis.

Bryn is one of less than 50 children in the country with a degenerative condition known as Late Infantile Batten Disease.

His parents had never heard of the condition before, but the doctor explained it meant he would gradually be robbed of the ability to walk, talk or feed himself, and would be unlikely to live past his teenage years.

There is no cure and no treatment to slow down the condition’s progress either.

Rhianon, said: “It was the worst case scenario. You scare yourself thinking has he got a brain tumour or some other awful thing. This was worse because you can’t even say we can try this treatment. There was nothing we could do.

“We were shocked and numb for quite a long time.

“It was a shock for the school as well because they had enrolled a child with speech delay and they ended up with a terminally ill epileptic child who could no longer walk.”

Rhianon and Tom, who live in Wroughton, first became concerned about Bryn’s development when he was 18-months-old and were still waiting for his first words.

When he was two he started speech therapy.

“He got to two-and-a-half and was developing normally except for his speech. He was being boisterous and running around,” said Rhianon, 41.

“When he was three he was moved up into the next year group at pre-school and you could see the other children had developed further but Bryn’s development had halted. Tasks he used to be able to complete easily were now difficult and he became forgetful.

“He always wanted to give the other children hugs but he would often end up playing on his own as he couldn’t understand their games.”

At this point, Bryn started blanking out. He would fall off his chair and when he was standing he would fall over as if he had been pushed.

Bryn was diagnosed with epilepsy.

He was put on medication but was still having about 100 episodes a day.

Meanwhile, his development continued to deteriorate. Tests on his fourth birthday showed he had a developmental age of two.

Bryn and his parents went through the statement process so he could get extra help when he started school. He was now showing autistic traits too.

“He was walking and still playing football before the summer in 2011 and by the time he started school in September he was in a wheelchair. We thought it might be the epilepsy drugs stopping him from walking at first,” said Rhianon.

“We could see he was getting frustrated because he couldn’t do what he had done before. He was getting more aggressive and I thought that was down to the epilepsy drugs too. “We were scared as we didn’t understand what was happening to him.”

After Bryn was diagnosed with Late Infantile Batten Disease, Bryn went on the waiting list for Brimble Hill School, and he started there just before the end of his first year at school.

“By the time he left Even Swindon he was still eating but he was a very messy eater.

“Some days he was walking with the help of a walker and some days he was using a wheelchair. He had to wear a helmet too because he kept falling over and hitting his head.

“He then started to lose his vision and was holding things really close to his face.

“He could say some single words but found it hard to learn new ones. He would use ‘Morgan’ for most things. Drink became ‘nink’ then ‘ni’ then he stopped being able to say drink at all.

“I remember him waking up and trying to say Morgan and it came out as ‘Mor’. I knew that was a real turning point for him.”

Bryn is now seven-years-old and can’t see, walk or talk and has to be fed through a tube.

He needs constant care, and Rhianon said his brothers Aidan, 11, and Morgan, nine, are very supportive of him.

Despite Bryn’s diagnosis, the family remains positive.

Rhianon said: “To be depressed about it isn’t going to make anything better. Bryn could be with us until he is 14 so we are trying to carry on with life the same as normal.

“He has always been very loving and smiley. He always loved football, music and running around with his brothers. You can see that character is still in there.

“He is still Bryn and he just finds it harder to communicate. Now he will respond with a change in his breathing, an expression in his face or a murmur.

“We have accepted it. We’re not bitter and we don’t think ‘why him?’ and ‘why us?’ What good would that do?

“It’s hard and it’s heartbreaking to see him in this condition when he was such an active child. Instead we try to make the most of the time we have together as a family. We feel blessed to have him in our lives.”

The family are supported by Helen House in Oxford, the only hospice caring for children with life-limiting illnesses in the Swindon area.

“Helen House don’t just support Bryn, they support us as well,” said Rhianon.

“Aidan and Morgan have started attending a club where they do a whole range of activities.

“It’s something for them rather than something geared around Bryn.

“When our palliative nurse suggested we go to a hospice it was such an early stage and we didn’t want to see a hospice. The nurse told us it’s a place of life not a place of death. It really is. It’s so full of love, life and laughter.

“They see Bryn as being Bryn and they don’t look at him as having a disability. They look at him as a child and how they can enrich his life.”

For two weeks every year, Bryn stays at the hospice and the family stay in the hospice’s flats.

They visit him every day while he is there but it means they can have some time off from the round-the-clock care that Bryn needs.

“He can go swimming, to the music room and do crafts.

“We come back later in the day and have dinner with him,” she said.

“They have a communal room where all the families eat together. It’s nice to meet other families in similar situations too.”

The family has rallied behind the charity’s appeal to secure £500,000 and is urging people to donate generously and allow staff to bring 30-year-old facilities up to modern standards.

Helen & Douglas House, split between a children and young adult hospice, has received £436,000 from NHS England towards the refurbishment and raised £500,000 since the end of 2013 though donations. It needs a further £500,000 to complete this essential work.

To make a donation visit www.helenanddouglas.org.uk, email the fundraising team at fundraising@helenanddouglas.org.uk, or call 01865 799150.

For regular updates on Bryn and his family’s fundraising visit https://www.facebook.com/teambryn.