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Whitstable boy's battle with blood cancer and rare form of Down's syndrome
06:00, 29 July 2021
updated: 10:26, 29 July 2021
The parents of a brave five-year-old boy were dealt a double blow when he was diagnosed with advanced blood cancer and a rare form of Down’s syndrome.
Animal lover Alfie Bills from Whitstable had been struggling to shake various illnesses and had been picking up small bruises across his body which were not disappearing.
He was rushed to hospital and tests revealed he had acute lymphoblastic leukaemia - diagnosed when he was just three.
But medics also discovered he had a rare genetic disorder called mosaic Down’s syndrome, leaving his parents, Andy, 40 and Jen Bills, 38, heartbroken.
The All Saints Close resident has bravely battled the blood cancer - having to endure a relentless regime of chemotherapy over the past 27 months.
In between the intense treatment, he has also managed to keep up a great attendance at Joy Lane Primary School.
Mr Bills, who is a sales manager at National Ventilation, has told of his son’s battle with the disease.
“Alfie was picking up various illnesses and struggling to shake them,” he said.
“We were back and forth to the doctors, being given antibiotics and nothing was working which went on for quite a few months.
“The defining moment was he was picking up small bruises all across his body which were not disappearing.”
When they visited the doctors in May 2019, his GP was concerned and Alfie was bluelighted to the QEQM Hospital in Margate immediately to get him checked. Tragically, tests revealed he had advanced blood cancer.
His parents were told if the cancer had not been discovered, he may have only survived another three weeks because of the damage to his liver and kidneys.
“At this point our world came crashing down,” Mr Bills added. “From that very moment it was all hands on deck from the consultants and specialists.”
But medics also discovered little Alfie had mosaic Down’s syndrome.
Those born with trisomy 21, the most common form of Down’s syndrome, have an extra copy of chromosome 21.
Whereas, those with mosaic Down’s syndrome have a mixture of cells where some have the standard 23 pairs of chromosomes, and some have the extra copy of chromosome 21.
“Prior to his cancer diagnosis, we were having a few difficulties with his development and progress when he was three-yearsold,” Mr Bills added.
“He was falling behind on his speech and mobility. We raised concerns with his GP who said he was a bit young and to keep an eye on him.”
Alfie had to stay at the Royal Marsden in Surrey for six weeks where he underwent an intense regime of chemotherapy, which made him bed-ridden.
After months of treatment, he went into remission in September 2019 and started his three year maintenance treatment to reduce the risk of the cancer coming back.
This involves taking oral chemotherapy drugs every day, another type of chemotherapy on a Wednesday and strong antibiotics on the weekend.
Once a month, he has to go to the QEQM to have another type of chemo through a portacath in his chest - which has more intense side effects - and a course of steroids, which causes mood swings and impacts his diet.
Finally, every three months he goes to the Royal Marsden where he has a lumbar puncture. These cause nausea and pain to his joints, but thankfully he can still move around on his own accord and play.
Although he is incredibly tired and feeling sick constantly, his treatment is working.
But as his dad said the “journey is far from over” and there is a risk of relapses.
Mr Bills, his family and friends have since completed a fundraiser, hiking 53km through the Peak District in July to raise cash for the Young Lives vs Cancer charity, which has supported Alfie.
They have raised more than £11,000 so far, but are looking for further donations. To contribute, click here.
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