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Devastated mum thanks doctors as her baby boy 'runs out of time'

Liverpool Echo logo Liverpool Echo 5 days ago Jess Flaherty
a person standing in front of a mirror posing for the camera: Mum Susie with baby Jaxon. © Susie Watts Mum Susie with baby Jaxon.

A devastated mum has shared her gratitude to those who are raising money for her terminally ill baby and the staff caring for him.

Susie Watts and her partner Tom were heartbroken when their son, Jaxon, was diagnosed with a rare and aggressive form of cancer at just seven-months-old.

"Affectionate, fun-loving" Jaxon was diagnosed with Primitive Myxoid Mesenchymal Tumor of Infancy (PMMTI), an extremely rare soft tissue tumour and it is believed he is the only known case in the UK.

Attempts to remove the cancer have failed and two-year-old Jaxon has gone home with his parents under the palliative care of Claire House Children's Hospice.

Speaking to the ECHO, Susie, 35, said: "At the time he was diagnosed, there were only 16 cases known worldwide.

"Jaxon is the only case in the UK and they know it's a chemo-resistant tumour, so really the first line of action is to have surgery then have Chemo to get rid of any remaining cells.

"If they don't get all the tumour out, it grows back more aggressively."

Unfortunately, Jaxon was unable to have surgery because the tumour surrounds main arteries so staff at Alder Hey and Great Ormand Street deemed it too risky to operate on.

a close up of a child s hair: Jaxon has always been an © Susie Watts Jaxon has always been an

Susie added: "His tumour surrounds his main arteries so they couldn't operate.

"They wanted to give chemo a go - for a while, it stopped the growth but it would make him really ill so they had to stop and have a rethink."

Jaxon and his family lived at Alder Hey hospital for nine months while a variety of combinations of chemotherapy were tried, as well as other treatments and experimental trials.

In March 2019, Jaxon started a clinical trial at Manchester Children's Hospital though the family were still linked with Alder Hey.

Susie said: "We managed to get him on a trial drug at Manchester Children's but we were still linked with Alder Hey and he made loads of improvements.

"He started crawling, he started eating for the first time - he's never been able to eat because the tumour puts pressure on his abdomen so he'd vomit violently straight afterwards.

"He has to be fed through his central line.

"On the trial drug, he was full of energy and we knew the tumour was still growing but the new drug had dramatically slowed it down.

"Then, last December, we noticed he had a swelling on his forehead and we found his cancer had spread to his skull and his spine.

Martin Huba, Jurgen Klopp posing for the camera: A hospital visit from Liverpool FC players and manager Jurgen Klopp © Susie Watts A hospital visit from Liverpool FC players and manager Jurgen Klopp

"The drug had managed to prolong his life in the trial, which was amazing, but then the cancer spread and it had metastatised.

"We looked at other trials but then he came down with chicken pox and in that time, he deteriorated to the point where we couldn't start the new trial.

"We weren't 100% sure we'd be able to go on the new trial anyway.

"Now, we're looking at creating as many positive experiences as we can and also giving back to all the services that have helped him."

The family, who live in Chester, were also featured on an episode of BBC One's Hospital series while Jaxon was receiving treatment at Alder Hey last year.

Susie was full of praise for the hospitals that have been a part of Jaxon's care.

She said: "We lived at Alder Hey for nine months, everyone was amazing to us.

"I can't say enough about the support we've had, the nurses on Ward 3B are like family to me - even the café staff, everyone has just been so brilliant to us.

"We want to make people aware of these amazing services we have.

"Alder Hey gave me six weeks of training to fit Jaxon's IV nutrition line so we could go home.

a little girl smiling at the camera: Jaxon is now receiving palliative care from Claire House. © Susie Watts Jaxon is now receiving palliative care from Claire House.

"Claire House has been looking after us in this palliative stage and they've made it possible for us to stay at home - even the delivery drivers bringing medications are lovely.

"We've even been able to go on holiday in the UK to the beach, which was amazing.

"He's always been such an affectionate, fun loving boy, so when he does come round, we try and do as much as possible.

"He's very weak right now."

Susie wants to raise awareness of the services that have been supporting her family, while also making people aware of the rare cancer Jaxon has.

Susie added: "There's no drugs available and there hasn't been many new drugs for children in the last 50 years, so we want to raise more awareness of PMMTI.

"We want to make sure we can do stuff in Jaxon's name, too."

To keep up to date with Jaxon's story, you can visit his Instagram page here.

To make a donation for Jaxon, you can visit the family's GoFundMe page here.

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