The heartbreaking tale of a family who lost their baby to a rare illness has inspired a mother in Old Bolingbroke to help raise awareness about the disease.
Wendy Hughes was reduced to tears when she heard how Emma Humphries’ six-month-old daughter died from spinal muscular atrophy and only too happy to support the charity she set up helping other families dealing with the disease.
The mum-of-four’s first fundraising event in aid of The Ally Cadence Trust for Spinal Muscular Atrophy raised £431 at a craft fair held at the Franklin Hall recently.
Wendy said: “This was the first one I’ve done for the charity but I’ve already planned another two events for later in the year.
“It’s such a good cause and it really needs support raising awareness - a lot of the children don’t live past eight months so time is really precious for the families.”
Emma says she was impressed by Wendy’s efforts and the total raised, which came from a raffle, tombola, refreshment sales and stall hire.
The money will help The Ally Cadence Trust provide emotional and financial support to families with children diagnosed with the terminal illness.
Emma created the charity in 2009 to raise awareness about the little-known disease after her daughter Ally died just 12 days after being diagnosed as a sufferer.
Having received conflicting information from doctors about spinal muscular atrophy and its life expectancy, Emma felt a better support network was needed for families whose children are diagnosed.
She said: “It’s devastating to hear that your child is going to die and has a terminal illness and there’s so much wrong information going around.
“We were told to expect 12 months and we got 12 days, Ally was never going to walk, she was never going to tale and she died aged six months, so we want to get out to the families as quickly as possible.”
The charity has received an influx of support recently after Lincoln based PR firm Shooting Star PR offered its services to the charity.
Emma said: “Since we began working with them its been fantastic, we’ve had so many people come on board to help.”
To book a stall and support Wendy’s next fundraising event - a ladies’ pampering shopping evening from 7pm on April 18 - call her on 01790 763387.
And to help Emma with a fundraising idea of your own call 0800 23 43 762.
For more information on the charity or to donate visit its website