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Three-year-old McKenzie-Blu Kemish from Totton is the only one in the world with rare condition with no name
HE IS truly one of a kind.
Behind his cheeky grin and playful nature, little McKenzie-Blu Kemish suffers from a unique genetic abnormality that has stifled his brave battle against a rare and aggressive cancer.
The three-year-old is the only reported case in the world of such a condition, leaving the youngster more likely to develop a rare lifethreatening syndrome that sees his own body attack itself, triggered by his chemotherapy.
The genetic abnormality, which is so rare it has no name, left doctors at Southampton General Hospital unable to tell his parents, John and Amberley, what future he will face.
But one year on since his cancer diagnosis, and despite the odds, the tough toddler from Totton has battled through without any complaint and is back home looking forward to a Christmas away from the hospital wards that have dominated his young life.
Mum Amberley said: “We always said from the beginning that every day was going to be a good day, no matter what we were faced with. We have to make the most of it and we get through.
“Looking back on the past 12 months, I can’t believe what we have all been through and it is like looking back on someone else’s life.
“He is an extremely unique little boy, who has been through such a lot and we are so proud of how brave he has been throughout all of this.”
What started off as a small lump on his neck has spiralled into a nightmare year for McKenzie-Blu, his parents and his three sisters.
With the lump growing to the size of a golf ball, McKenzie was diagnosed with neuroblastoma, a rare children’s cancer, but as the tumour was so close to so many vital nerves and arteries that could affect his speech and brain if damaged, doctors’ first weapon against it was chemotherapy.
However, that treatment triggered a rare syndrome called Atypical Hemolytic-uremic Syndrome (aHUS) that caused his kidneys to fail and left him so ill that he couldn’t leave hospital for eight months.
But what makes McKenzie-Blu unique is that doctors discovered he has a rare genetic abnormality which makes him more likely to suffer from aHUS.
While most patients would only get aHUS once in a lifetime, McKenzie- Blu has already beaten it twice in a year, leaving his kidneys so damaged that he will need a transplant before he is an adult.
Remarkably, McKenzie-Blu has still come out fighting and after doctors were forced to surgically remove the tumour because it wasn’t shrinking, the toddler is now back at home, starting pre-school and enjoying playing with his sisters.
However, because he became so ill with the syndrome, his chemotherapy doses to fight the cancer had to be reduced, increasing the chances of a relapse for the youngster, who remains on constant medication and had frequent check-ups.
Amberley, who is expecting another child in December, said: “We will always wake up each day worried if this is going to be the day that the scan reveals it is back and every appointment is scary for us, knowing that his chances of relapse are so high.
“But we just have to make sure he is as fit as he possibly can be so that if it should come back, he is strong enough to fight it.”
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