September 18 2014 Latest news:
Nine month old Jenson Blake with his parents Ashley and Liz at their Caister home. Jenson has congenital nephrotic syndrome and his family is fundraising for the Nottingham Childrens Hospital where Jenson is being treated. Photo: Steve Adams
Friday, September 21, 2012
BRAVE tot Jenson Blake smiles as he plays with his toys, to the delight of his doting parents.
But the Caister nine-month-old has been through a lot in his young life as he was born with a potentially fatal kidney condition - congenital nephrotic syndrome.
Two scars on Jenson’s neck mark where doctors fitted a line in his chest, to ensure he gets enough protein in his blood to prevent fatal swelling.
And at the tender age of two Jenson will need a double kidney transplant to keep him alive.
He has amazed his mum and dad with his resilience, and now they are fundraising to help other infants in his situation.
Jenson is the apple of his parents’ eyes, as they had longed for a child together and went through two rounds of IVF before they were successfully conceived.
But after he was born Jenson’s feet began to swell, and doctors told parents Ashley and Liz they both carried a “freak gene”.
Medics at the James Paget University Hospital had been puzzled by the swelling, and mum Liz was convinced her new baby must be allergic to milk.
But at eight weeks old, Jenson’s legs and stomach began to swell, and he was referred to a specialist kidney unit in Nottingham where consultants discovered the rare condition.
Poor kidney function means protein from his blood is lost in his urine and water is not held in his blood - causing potentially fatal swelling in body tissue.
His parents must use the line inserted in his chest to feed him protein five nights per week - for six hours each time - to stop the swelling occurring.
“We try to do it while he’s asleep,” explained mum Liz, 34. “We try to make him not really aware of it.”
And she said the tot has been remarkably brave.
“You wouldn’t think there was anything wrong with him,” she said. “For a child with his condition it’s amazing. He loves Spongebob Squarepants.
“As he’s got the line in his chest he doesn’t like lying on his stomach and he has two scars on his neck.
“But he stands up and balances, waves and says ‘bye bye’. He’s amazing everybody.”
She and husband Ashley, 28, work at the family caravan park business and must create enough time to care for Jenson. They make the trip to Nottingham Children’s Hospital once a month, visit the Paget every fortnight and feed Jenson through his line at home.
Ashley said: “It was hard as we went through IVF to have him, but you just have to get on with it. People say ‘I don’t know how you do that,’ but if it’s your baby, you do it.
“We were told we both carry the same freak gene and apparently the chances of that happening are very rare. It’s just one of those things.
“The hospital support and training has been amazing.”
Jenson was born on December 2, 2011, and his parents say he is looking healthy considering his condition.
Liz explained: “When he gets to around two he will have a double kidney removal.
“Hopefully they can leave him on the line until then unless he deteriorates, then he would go on dialysis.
“We’ve been told that’s a lot harder.If the kidney takes it can last eight to ten years, but because of his age and the technology it’s hard to tell.
“He could have three transplants in a lifetime.”
The family - including Jenson’s half-sister Chloe, seven, who visits at weekends - have been rallying around the tot and are raising cash for The Kinder Fund to help other youngsters with the condition.
The charitable fund supports the work of the Children’s Renal and Urology Unit, based at Nottingham Children’s Hospital.
Ashley has organised a 22-a-side football match, aiming to raise £500.
His team will take on a side put together by friend Dave Bradnum on Sunday, October 7, from noon to 6pm.
The match will be four and a half hours long, and there will be a raffle and burger van as part of the fun afternoon.
To sponsor them, visit www.justgiving.com/Ashley-Blake