Norwich mum speaks of baby daughter’s battle against rare condition
PUBLISHED: 21:22 16 April 2011
Archant copyright 2011
Little Daisy Ogston is just one of 130 people in the world to be diagnosed with a rare condition which means she is missing the front of her skull. The syndrome puts her at high risk of contracting meningitis and she could be left with brain damage or worse with a single blow to her head.
Her mum last night spoke of how she fears for her youngest daughter’s safety on a daily basis, but cannot fund a “safe” room for the tot. Daisy, who celebrated her first birthday on Wednesday, was born with Adams-Oliver Syndrome, which, among other problems, includes a large skull defect requiring constant protection to reduce the risk of infection.
The Bowthorpe youngster also suffers apnea attacks where she stops breathing, has a hole in her heart and is in and out of hospital.
In the family home, in Winchcomb Road, off Dereham Road, she has to be constantly monitored in case she bumps into something or stops breathing and her mum Kerry, 31, rarely leaves the house with young Daisy for fear she will pick up an infection.
Doctors have recommended that Ms Ogston’s three-bedroom home is extended to provide a specially-adapted room for Daisy where she will be safe and free from danger, but the family cannot afford to have the work done.
Ms Ogston, who lives with her partner Mark Jenner, 33, son Kyron, 11, and seven-year-old daughter Izzabelle , has applied for funding to help towards the costs, but has so far had her application turned down.
Council officials, however, say that they are currently assessing the situation to see whether or not the family’s case meets the criteria and eligibility for the Government’s Disabled Facilities Grant, which can be given to help fund adaptations.
“Everyone looks at Daisy and thinks she’s all right, but she wouldn’t be if she knocked anything,” said Ms Ogston, who looks after Daisy full-time.
“When we first realised something was wrong with her, I was really worried, I thought she was going to die. She’s generally a happy little girl, but we’re worried about the hole in her heart and she has to be constantly monitored because of her head and the apnea attacks.
“She just needs somewhere safe. Even getting her in and out of the car is difficult and anywhere we go we worry about infection. If she knocks her head she could have brain damage or be dead there and then, which is a high price to pay for her falling into something.”
Since Adams-Oliver syndrome was first described in 1945, it has remained a rare condition, with just some 130 cases reported in medical literature to date.
In Daisy’s case, the condition was not picked up in the womb and it was only when she born at the Norfolk and Norfolk University Hospital that doctors noticed there was a problem.
When she was just three months old, Daisy had a cerebrospinal fluid leak, which has put her at risk of meningitis and septicaemia. Daisy also has abnormalities of her hands and feet and of her heart and arteries.
The youngster has to go to Great Ormond Street Hospital in London once a month and is in and out of the Norfolk and Norwich University Hospital almost weekly.
Just last month, she was rushed into hospital with optical cellulitis, an inflammation of the eye socket.
“It’s really intense,” said Ms Ogston who moved with her family into the Winchcomb Road council property three years ago.
“It’s getting worse now she can crawl and it will be even harder once she starts walking.
“You don’t want to restrict her, but at the same time you can’t let her out of your sight. It’s my responsibility to make sure she is safe.
“To have a soft-padded room would change our lives. It would give her independence and would help her development and her health which would keep her happy.
“Moving really isn’t an option for us. I can’t be moving boxes and everything else at the same time as looking after Daisy. I can’t even think about that [moving], not even if they offered me a palace.”
Doctors will re-scan Daisy’s skull when she is five or six- years-old. If the skull has grown by then, she will then have to wait until she is 12 before she is strong enough for an operation so she can have hair.
Her parents will have to wait to see if her heart defect gives her any more problems and if her toes, which are currently underdeveloped, grow.
A spokesman for Norfolk County Council, said: “It wouldn’t be appropriate for us to discuss the details of an individual case.
“But we are currently assessing whether this case meets the criteria and eligibility for the Government’s Disabled Facilities Grant and we will continue to keep the family updated.”
A City Hall spokesman added: “When a person requests adaptations to their home due to disability, the social services team at Norfolk County Council first has to visit and make a complete assessment of the situation. Their expert occupational therapists will report back and if adjustments are needed, the case is referred to us to carry out those works.”
To donate to Daisy’s fund and to find out more about the youngster, go to her blog at http://dottydaisy.blogspot.com
Do you know a brave youngster with a rare condition? Call reporter Kate Scotter on 01603 772326 or email firstname.lastname@example.org
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