The machine that will give my Kara new lease of life; NOW WE'LL BE OFF MAKING MORE MEMORIES SAYS PROUD MUM.
TEN-YEAR-OLD Kara Downie melts her mum's heart when she smiles. For her "happy little personality" shines through a raft of severe disabilities, including an incredibly rare condition where large parts of her brain are missing.
The youngster suffers from Holoprosencephaly, a major defect of brain formation where, instead of normal brain tissue, the skull is swelled with extra cerebral spinal fluid.
It leaves Kara with severe developmental delay, cerebral palsy and epilepsy.
She needs a wheelchair and is totally dependent on doting mum Caroline, as well as a constant supply of oxygen.
From her home in Rhyl, Kara is connected to machines that take oxygen out of the air and concentrate it.
But when she goes out she has to rely on gas cylinders, forcing Caroline to cut short errands and cancel hospital appointments This portable concentrator with her daughter in fear of the oxygen running out.
hope for Kara 10, who suffers disorder where her brain The problem spurred Caroline to get in touch with Surrey-based charity React (Rapid Effective Assistance for Children with potentially Terminal Illness), who have now provided her with a portable concentrator which can be installed into the family's mobility car.
She said: "Kara is totally dependent on me for everything. "She is fed through a tube and needs a constant supply of oxygen.
"I get a lot of help and support from nurses and Kara has two-to-one help at her school, Ysgol Tir Morfa. But it was becoming a strain not being able to take her very far because the oxygen cylinders just wouldn't last."
Kara was born prematurely and was given a routine brain scan which showed large areas of the brain were missing.
She was later diagnosed with Holoprosencephaly and had to be fitted with a tracheostomy tube to aid her breathing and a gastrostomy to feed. Her condition also causes severe scoliosis and spasms.
Caroline added: "Despite her disabilities, Kara is very happy and smiley. She is easy to entertain and loves school. She also likes being around other children.
"Now that we have the portable convertor, we'll be off making more memories.
"It will make an enormous difference to Kara's quality of life and will allow us to try and live as normal life as possible, instead of having to be cooped up indoors."
. For more information about React, visit reactcharity.org.
This portable oxygen concentrator offers new hope for Kara Downie, 10, who suffers from a disorder where parts of her brain are missing
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|Publication:||Daily Post (Liverpool, England)|
|Date:||Sep 4, 2009|
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