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Tom and Ben

"Noah’s Ark makes the normal things possible."


Helen recalls walking past the Noah’s Ark charity shop in Barnet, commenting to her husband as to what a terrible thing it was that there was a need for a children’s hospice. That was before she needed to use Noah’s Ark’s services.

Ben and Tom, seven-year-old twins, are bright, positive, energetic and full of fun. Tom, the child supported by Noah’s Ark, is verbal and when asked about Noah’s Ark exclaims: “Great!”. Unusually, Ben has the more profound disabilities but his condition is not considered life-limiting so is not technically a ‘Noah’s Ark child’.

Helen, a school inspector, was told at 20 weeks pregnant that one of her twins, Tom, would have a severe disability because of hypoplastic left heart syndrome. It seemed at stage, that his twin brother Ben would ‘get away scot-free’.

But at 31 weeks, Helen went into labour and it was only after he was born that doctors found that Ben had holes in his heart. Helen recalls the near-impossibility of having to try and express milk for two babies in two different hospitals, all the while recovering from a C-section and being in hospital herself:

“Those first few weeks were extremely tough. Finding out that Ben had cerebral palsy, making life or death decisions about Tom’s care, a two hour feeding schedule. All of it adds up. But you can only react to what’s in front of you today – there’s no point getting stressed”.

The boys were two when Helen found out about Noah’s Ark and her gratitude for the support is evident as she speaks:

“Good carers are incredibly hard to find. Looking after the boys can sometimes feel impossible. That’s when I completely rely on Noah’s Ark – they’re never off duty”.

“But often it’s just for the tiny things in life – enabling us to go shopping with the boys which would just be impossible without them. Noah’s Ark makes the normal things possible.”

Helen is so effusive about the support she’s been offered that her mum has started volunteering at a local hospice and family members have done some fundraising for Noah’s Ark too. But despite the support she’s been offered, Helen is absolutely determined that her story shouldn’t elicit sympathy:

“I hate it when people say ‘I don’t know how you cope’. We get on with it because we love the boys and that’s what you do for family. There’s no question about it. But it certainly helps having Noah’s Ark to make things just that little bit easier, including the opportunity to compare notes with other parents who are in the same boat.”

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