Defying the odds – grit and determination run in the family

It’s just over two months until Mark Little will be leading a team paddling across the channel in a bid to raise cash to help a very special little girl.

Four-year-old Elsie-Rose Nugent suffers from spinal muscular atrophy, a progressive disease that leads to muscle weakness and loss of movement.

But little Elsie has spent he life defying the odds, when she was just 11 months old her mum, Natasha Kelly, was told the little girl would not see her first birthday and while most of those who suffer from this debilitating disease only see deterioration in their condition, over the last 12 months Elsie has improved.

How much of that improvement is down to a new drug that Elsie is being treated with remains to be seen but for the moment Natasha is delighted by the progress her daughter is making; she can sit up on her own for almost a minute, something that a year ago people would have said would not be possible.

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Celebrating a successful session with her physiotherapist  so a very well deserved thick ice cream chocolate milkshake was in order.

The drug is called Nusinersen, the technical detail is that for our lower motor neurons to function and remain healthy, our cells need to produce the survival motor neuron (SMN) protein. The ability to do this is mainly controlled by the survival motor neuron 1 (SMN1gene, that is what Elsie’s body is unable to do and this new drug does that for her.

But Nusinersen is expensive and still in the experimental stages. Each dose costs £75,000 and Elsie needs six doses during her first year on the drug and then three doses in the second year. Natasha says she doesn’t know what the future holds and whether Elsie will be able to stay on it or not, all she knows is that since her daughter started taking it her condition has improved markedly.

The drug is not the only thing that is expensive though. Elsie’s bed was £5,000, her special wheelchair was £26,000 and for Natasha fundraising has become a big part of her life, trying to ensure she is able to provide what Elsie needs. Being part of a well known Old Town family helps and Natasha, along with Elsie are, down among the fishing community, running the family fish stall on an almost daily basis.

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Hopsital appointments play a big part in Elsie’s life this time to get her new spinal brace fitted.

Natasha says that Mark’s fundraising effort is particularly special, when she was a child her parents ran the Dolphin, the pub that Mark now runs, and she spent many happy years there.

Since Elsie was diagnosed Natasha has been hugely grateful for the support she has received from local people and now she wants to give something back. She has set up the Elsie Rose and Friends Foundation. At one level it allows Natasha to be absolutely transparent about where any money people donate is going and how it is being used. Three independent trustees oversee the foundation and deal with the allocation of cash.

Second it means that when money is available Natasha can help other children in similar predicament to Elsie and her cousin Teri-Lee helps out driving the fundraising campaigns. Natasha says the support she has had from family and from the community in the old town has been amazing and she realises she is lucky to have that support. Part of the motivation to set up the foundation came from knowing there were parents with children who have serious conditions who did not have the support that she enjoys and she wanted to do something to help them.

So far this year Natasha ran the Hastings Half Marathon, something she had never done before and she is already looking at ideas for the future including taking part in a mud-run and organising a fun-day.

But with just ten week to go until Mark sets sail across the English Channel as part of a four man team in two, two-man kayaks training is stepping up a gear. He now has the actual kayak he will use on the journey and they are practising in that as much as possible. But for when work commitments don’t allow all the team members to get together they have single man kayaks and get out on the water as much as possible to train for the big day.

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Mark’s training regime is moving in to top gear.

The pair of Kayaks, along with a safety boat, will set out on the trip from Dungeness in Kent heading for Boulogne on the coast of France. The trip is scheduled to take place sometime during the week beginning August 20 depending on tides and weather conditions.

It will take about seven hours to complete the 26 mile trip and as part of his training Mark is using the stretch of water between Hastings pier and Eastbourne pier to practise. Mark says one of the biggest physical challenges is sitting properly in the kayak for such a long period of time. The English Channel is one of the busiest waterways in the world and when Mark and the team reach the main shipping lane they will have to get permission to cross. Once in Boulogne the team will put their kayaks on a ferry and head back to the UK.

There will be charity pots and sponsor forms in The Dolphin and anyone who wants to donate online can go to a just giving page, to donate follow this link…

Read the full, original story about marks’ exploits here

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