Holly says she tried several times to see her GP in person but was repeatedly turned away

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A mum told her toddler had less than two years left to live claims she was repeatedly denied face-to-face appointments with her GP.

Holly Lewis-Vale says she tried eight times to see her doctor during lockdown after her son Gunner developed worrying health problems but was told it wasn’t allowed.

She’d noticed that his head was growing faster than the rest of his body and he had trouble breathing.

It turned out the youngster, aged 20 months, had a genetic condition which meant his life would be cut drastically short.

Mum-of-two Holly and her husband Jamie, 31, claim they rang their GP surgery again and again but were denied a face-to-face appointment due to the c oronavirus pandemic.

"They told me that as children were carriers, they were limiting contact," she told BirminghamLive.

“My husband took him down there at one point to demand that he was seen but he was turned away. They were always helpful on the phone, but I knew that I needed someone to see him.”

Gunner had a hernia and breathing problems and Holly was worried

Gunner also developed a hernia, and Holly sent videos of it and his laboured breathing to her health visitor but she claims she was still not offered a face to face appointment. All health visits, she said, were done over the phone instead.

It was only after Gunner hit his head when he was learning to walk in March this year that Holly took him to A&E at Princess Royal Hospital in Telford.

He had a high temperature, so the consultant was called who by chance had seen two patients previously with a condition called MPS and so was able to begin the diagnosis.

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Gunner was diagnosed with MPS type 1 which means his body is unable to break down sugar, causing protein to be stored in his vital organs including his liver and brain.

His parents were told that he needed a stem cell transplant but that no one in the UK was a match. Without one, his brain would suffer irreversible damage.

Without a stem cell donor Gunner won't live for more than two further years

"We didn’t have any worries when he was a newborn other than him failing his hearing tests and a small hernia which we were told would heal on its own," said Holly Lewis-Vale, from Highley, Shropshire.

“It wasn’t until around eight months ago that I noticed his head seemed to be growing faster than the rest of his body.

“The bridge of his nose was extremely flat which affected his breathing and caused him to snore loudly.

“It got to the point where I didn’t take him out in bad weather because I knew he’d be poorly as his nose was susceptible to infections.”

Holly and Jamie were heartbroken when they received the diagnosis – especially as it meant their precious son would have less than two years left to live if he didn’t get the stem cell transplant.

“Without a transplant, he’d likely only have one or two more years left. Hearing that completely broke me and I just cried all night,” Holly said.

The family were sadly not a match for the toddler but hope a German one will prolong his life

“The doctors told us it would be completely life changing. Any damage that has already happened is irreversible, but we try to be positive and focus on the now,” said Holly.

“His head is large due to his body storing the protein that he can’t break down in his brain. His spleen and liver are enlarged which is why his umbilical hernia was continuing to grow.”

Since then, Gunner has received weekly invasive enzyme treatments at Birmingham Children’s Hospital to manage his condition.

Holly, Jamie and their four-year-old daughter Daisy, were all tested to see if they were a stem cell match for Gunner, but none of them were.

Gunner's family and staff at Birmingham Children's Hospital have put out an urgent international search for a donor. And, at the start of June, Holly received the news that a match had been found in Germany.

If successful, the procedure will extend Gunner’s current life expectancy by seven years.

“It’s been a really emotional time for the whole family,” said Holly. "When I thought we weren’t going to find a donor I cried all night.

“I didn’t want to get my hopes up in case anything fell through. When I knew it was going to go ahead, I breathed a huge sigh of relief.

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“It’s down to the amazing work of Birmingham Children’s hospital that we finally found a match in Germany.”

The family will now have to isolate for two weeks at the end of this month. Holly and Gunner will then go to Birmingham’s Children’s hospital where he will undergo chemotherapy for a week in preparation for the transplant.

Gunner will be in hospital for around 72 days depending on how he reacts to the transplant.

Holly said: “We want to focus on quality (of life) rather than quantity. He’s such a clever little boy and has an amazing bond with his big sister. We just want to get him as well as he can be.”

Due to the ongoing pandemic, only Holly will be able to be with her during his time in hospital.

Holly said: “We’ll be a team in hospital together and then my daughter and my husband will be a team at home.”

After Gunner’s diagnosis, Holly started a fundraiser to encourage more people to join the stem cell donation register. Only two per cent of the UK are signed up to the opt-in service.

So far over £12,800 has been raised with more events planned over the summer.

A spokesperson for NHS Shropshire, Telford and Wrekin Clinical Commissioning Group (CCG) said: “Although unable to comment on individual cases, Shropshire, Telford and Wrekin GP practices have made every effort throughout the coronavirus pandemic to ensure patients get the care they need despite the restrictions that have been in place to keep both patients and staff safe.

“Where face-to-face appointments have not been appropriate or safe to carry out, health professionals have gone out of their way to make the best use of technology in order to support patients and service users.

“We would like to express our sympathies to Gunner and his family as they come to terms with managing his condition and wish them the best with his treatment.”

A fundraising campaign GunnersGoal has been set up to help find stem cell donors.