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Battling tot gears up for milestone
A brave Leyland boy who suffers from a rare neurological disorder is gearing up for his first birthday.
Frankie Forgione suffers from Krabbe Leukodystrophy, a condition which affects just one in every 100,000 people.
The battling tot, who lives in Farington, needs 24-hour care and struggles to lift his head or open his eyes. Sufferers rarely live beyond the age of two.
But the youngster is now gearing up to celebrate a milestone birthday that some feared he might never reach.
His mum, Kim Robinson, says his birthday on August 28 will be a bittersweet moment.
She said: "I'm excited about his birthday but in another way I'm not. It means he's getting older and I just don't want him to leave us.
"But we're going to celebrate it and I'm so proud of him."
Frankie's rare condition first came to light when he was just three months old and he started experiencing feeding problems and began losing his ability to smile.
After numerous tests, doctors eventually found that his problems had been caused by a gene that both his mum Kim and dad Sean carried.
The problem arises when two carriers have a baby - as in Frankie's case.
Kim said since the Guardian highlighted Frankie's condition, she has had overwhelming support from local people, including a woman from Wigan who's son also suffered from the same incurable disease.
Speaking on the blog site she uses to keep people informed of Frankie's progress, Kim said: "As time ticks on I'm learning of more families in the UK who have been affected by this terrible disease. Each time I feel heartbroken all over again thinking someone else has to go through what we are experiencing."
The disease means Frankie has lost his eyesight, has very limited movement, and has to take more than seven medications up to three times a day.
His parents say they want awareness of the disease to be improved so more children could be screened at birth.
A fun run will take place on August 29, the day after Frankie's birthday, to raise money for Derian House, who provide Frankie with much-needed care.
The fancy dress run with start at the Railway pub in Leyland and round the Cross, before heading back.
To learn more about Frankie and his condition or to donate to Derian House, visit www.justgiving.com/feetforfrankie or www.caringbridge.org/visit/frankieforgione.
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Weather for Leyland
Monday 06 February 2012
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Temperature: -1 C to 6 C
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