Fundraising for battling Bethany
LITTLE Bethany Woods is a beautiful toddler with curly blonde hair and a winning smile.But the 17-month-old is suffering from an extremely rare type of Muscular Dystrophy which means she will never walk and live the same life as other children her age.
By JESSICA NICHOLLS
LITTLE Bethany Woods is a beautiful toddler with curly blonde hair and a winning smile.
But the 17-month-old is suffering from an extremely rare type of muscular dystrophy which means she will never walk and live the same life as other children her age.
For months the doctors were treating her as a medical mystery as she endured test after test to find out what was wrong with her.
Now her family and friends are rallying round to start the Bethany Tayla Woods Fund that will help give her a life that is as close to normal as possible and are in the process of registering it as a charity.
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Bethany will need a specialist wheelchair that can help support her body as she suffers from merosin negative congenital muscular dystrophy. She may never be able to write so will need a computer to help her work and they also need to build an extension to give her a downstairs bathroom and bedroom because she cannot get up and down the stairs.
Her problems started from birth when her mum Treena Woods noticed that her hand was positioned awkwardly and her one foot was turned in.
A paediatrician noticed that the tiny baby seemed floppy and called for a second opinion but Mrs Woods and her husband Kevin were told that everything was fine and they could go home.
But as the weeks progressed the family started to notice that unlike most babies Bethany rarely moved.
Mrs Woods, 28, said: "She would just lie there. Babies are normally kicking around from the word go.
"I thought I had the most happy and contented baby in the world."
The midwife had been coming to visit Bethany at home and eight weeks later decided to call the doctor who referred her to the hospital.
Her worried family then had an agonising wait until May last year to find out what was actually wrong.
Mrs Woods said: "She had an MRI scan and other tests and eventually had a muscle biopsy to find out what was wrong."
A month after the biopsy the family were told that she had such the rare form of muscular dystrophy that only around 50 people in the world have it. It means that Bethany's muscles do not build up the protein they need to make them strong.
Bethany has to have a specialist high chair from the hospital that stops her just flopping forward because she does not have the muscles to right herself and also has to wear a special tubi-grip on her body.
Bethany is also underweight. No matter how much she is fed she uses up so much energy trying to move that she burns up anything that she eats.
Without her family and friends supporting her, Mrs Woods knows that life would be so much more difficult.
Even Bethany's six-year-old brother Ryan is a big help. Mrs Woods said: "He absolutely idolises her.
"Although he does get jealous sometimes he will never show it in front of her.
"He is a really bright lad and I know that if something needs doing upstairs I can go up and he will keep an eye on her and won't let her flop forward."
Mrs Wood's mum Janet and her two brothers Peter and Gary Nunn have all thrown themselves into the fundraising effort along with Kevin's mum Chris Wood.
They have many things in mind, planned throughout the year – Peter is braving having his chest waxed and a fun day is being organised at the Ship Launch pub in Cliff Lane in May.
Mrs Woods said: "It is a lot to come to terms with but I have to be positive.
"We are just so lucky to have her."
n A special website is being set up for the fund which gives details of how people can donate to the fund and should be in operation in the next couple of days.
The address is: www.bethanytaylawoods.co.uk