Published Date:
30 August 2007
A BABY battling one of the world's rarest medical conditions is nearing the first birthday his mum feared he would never see.
Jake Roberts underwent heart surgery after he was born with the ultra-rare condition Nager syndrome.
Only 75 cases of the syndrome have been identified worldwide, and it left baby Jake with an uphill medical fight.
He was born with holes in the heart, breathing problems, an underdeveloped right arm, fingers and ears and a cleft palate.
He still relies on daily medication and a device to help him breathe.
But dozens of family and friends will gather next month to celebrate Jake's first birthday.
Mum Stephanie, of Ullswater Avenue, Jarrow, will have a double reason to celebrate, as she is 21 within days of her son's birthday on September 13.
She said: "We have had a terrible year since Jake was born, and there were times I didn't know what was going to happen.
"But Jake has made it through and we are planning a big birthday party for him.
"Although he will still have to have surgery, Jake is starting to put on weight, even if his development is very slow compared with normal babies."
Jake is still very small, at 13lbs 13oz, which is the average weight for a baby at four months old.
And Nager syndrome also means he is still wearing clothes more suitable for a new-born baby.
Miss Roberts added: "Jake has to develop a little before he can have any surgery, so it will be next year before he can undergo any medical procedures."
Borough fundraisers moved by Jake's plight recently raised £3,131 for fibre-optic and other sensory equipment.
Doctors identified Nager syndrome when Miss Roberts underwent a scan during pregnancy.
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Last Updated:
30 August 2007 12:28 PM
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Source:
n/a
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Location:
South Shields