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Needham Market/Woodbridge: Mums, whose babies died from rare muscle disease, team up to raise money for SMA Support UK

PUBLISHED: 12:00 31 August 2014

Shareen Moir and Sarah Wilkins are organising a fundraiser in memory of my their little boys Regan and Isaac

Shareen Moir and Sarah Wilkins are organising a fundraiser in memory of my their little boys Regan and Isaac

Their lives came crashing down when they were told their babies had a life-changing condition – but now they are determined to make more parents aware.

Isaac Wilkins.Isaac Wilkins.

Mums’ Sarah Wilkins and Shareen Moir were united in grief when their sons were born with spinal muscular atrophy (SMA) – a genetic disease which causes muscle weakness and progressive loss of movement.

Both babies had serious types of the disease, and sadly neither made their 1st birthday, but the mums had no idea until heath visitors noticed something was wrong during routine check-ups.

Mrs Wilkins, 30, from Stowmarket Road, Needham Market, said: “The health visitor gave Isaac his six-week check up and said there’s something not quite right with his muscle tone and so we went to the hospital.

“He was happy and smiley and I thought he was normal but she noticed that he could not hold up his head as he should.

Regan MoirRegan Moir

“But as a first time mum I had not noticed it – you read in books and they say they are not always able to do the same things at the same time.”

Isaac was born in October 2009 but he would only live until he was 20 weeks old.

Mrs Wilkins, who has a three-year-old son, Theo, added: “We took him to the doctor and he was sent straight to hospital. It was later the next day the consultant suspected the conditions was SMA and said it was life limiting and is unlikely that he will see his first birthday and less likely his second. Our whole world came crashing down.”

Mrs Moir, 33, from Churchill Close, Woodbridge, had also never heard of SMA when she had Regan in January 2010.

The women met because of SMA Support UK. The charity funds research into the disease and provides support for parents.

Mrs Moir, who is now mum to nine-month-old, Harley, said: “When the doctor mentioned the condition to us, the only think I could think of was the formula milk (brand). I had never heard of anything like it, I did not know there was such a condition out there. I was in a lot of shock.”

A health visitor raised the alarm at a scheduled weight check and Regan was taken to see a doctor before he was admitted to hospital. He was formally diagnosed at about eight weeks and died in July 2010.

But now the pair have teamed up with friends to fundraise for the charity. Next Saturday there will be a fun day dedicated to raising money.

The event will be held at Debenham Leisure Centre from 12noon to 4pm and will include live music, craft stalls, children’s activities, a dog show and fair games. To donate go to www.jtsma.org.uk/www_facebook_com_avillageaffair

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