Funday raises money for Bethany
AROUND £1,000 has been raised at a fun day to benefit a little girl suffering from a rare condition.Bethany Tayla Woods suffers from merosin negative congenital muscular dystrophy, which means she does not have enough protein in her muscles to build them up and grow properly.
AROUND £1,000 has been raised at a fun day to benefit a little girl suffering from a rare condition.
Bethany Tayla Woods suffers from merosin negative congenital muscular dystrophy, which means she does not have enough protein in her muscles to build them up and grow properly.
Only around 50 people in the UK are thought to have the condition and Bethany's parents Treena and Kevin are now doing all they can to raise money for their daughter to have a better quality of life.
She needs a special wheelchair and their house in Cecil Road also needs an extension because as the two-year-old grows her family will not be able to carry her up and down the stairs and she will not be able to walk herself.
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There is also not enough room in their home for her to manoeuvre her special wheelchair so the house will be adapted for that.
Friends, family and businesses have rallied round to raise the money needed.
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The wheelchair costs between £8,000 and £12,000 and the house alterations have been estimated at up to £30,000.
On Bank Holiday Monday a fun day was held at the Ship Launch Inn, Ipswich with bouncy castles, gladiator jousting, sumo suits, a balloon race, and several stalls to raise money for the youngster.
Now Mrs Woods just wants to say a big thank you to all those who have helped out and have contributed to trying to give Bethany a better quality of life.
She said: "I especially want to say a big thank you to Sue Irvine and her husband Richard from the Shiplaunch as it was their idea and without them it would not have gone ahead.
"I also want to thank everyone for their help and support who came along."
The family may be entitled to a grant to help them out but they do not want to rely on that and felt they had to do something for Bethany themselves.
Mrs Woods said: "A lot of people might think that having an extension might be more for out benefit than hers.
"But we have had specialists round such as occupational therapists who have said it needs to be done.
"Our bathroom and kitchen are so small we would not get a wheelchair in there.
"I don't like the fact that she will be downstairs when we go to bed but our only choice is to extend or to move to a bungalow and we can't afford that."
FASTFACTS: Congenital muscular dystrophy is thought to be due to an abnormality in the muscle protein framework caused by a deficiency of a protein called merosin (or laminin).
People with merosin negative form of the condition are more severely affected than merosin positive patients.
Work is currently going on to provide effective pre-natal diagnosis and ultimately to offer treatment.
Symptoms are likely to include: floppiness, poor head control, muscle weakness and delayed motor milestones, such as when a child learns to walk or crawl.
Source – Muscular Dystrophy campaign.