About HemiHelp and Holly

Why are we doing this???

When Jamie and Chevs got married, the most exercise they did was weight lifting (glass to mouth and back again). With the arrival of their daughter Holly, life changed a little more than they were expecting, as during her first year they discovered that she had Hemiplegia – a complex form of cerebral palsy.

What is Hemiplegia

Tests at Great Ormond Street

Hemiplegia is caused by damage to some part of the brain and children can suffer from a broad spectrum of symptoms – no two hemiplegic children are the same. In Holly’s case, the physical difficulties were the first and most obvious – Holly has similar effects to that of a stroke with weakness down her right hand side, although it is slightly more complicated in that she doesn’t really even recognise that she has a right hand side – she struggles to use her right hand and trips over a lot. As she gets older, we are now realising how many things are made for right handers – Wii’s, cameras, DS’s, scissors and so on.

Splint after Botox

Hemiplegic children also have more than a 30% chance of developing epilepsy and Holly had her first big fit when she was one. After trying many anticonvulsant drugs without success, she was referred to Great Ormond Street where, after two further years of tests, she finally underwent a hemispherectomy (this removed part of the brain and disconnected the whole of the left hand side of the brain from the right). She has not had a fit since (yay!), although she can no longer see right of centre which brings its own problems.

In the mean time, Holly’s speech and language delay left her with severe behavioural problems – she has always been a lovely character but hitting, biting and kicking off were all a normal part of her day. She has also been diagnosed with dyspraxia, perseveration (couldn’t cope with change) and then finally in 2008 with Autistic Spectrum Disorder, of which she has a rather lovely form known as ‘Active but Odd’. This means she actively seeks out conversation (with absolutely anyone!) but it’s not always very appropriate and a little egocentric.

Holly now

As is the norm with Hemis, understanding of the complexities of their condition at school is still poor and parents often have to battle to get appropriate recognition and help to cope with all the subtle side effects. We have just spent the last two years building a case against the LA and with the help of a rather brilliant lawyer and a few other specialist reports (ker-ching) she started at the very lovely Blossom House – a school for children with language and communication disorder. She is loving it and really thriving there – at a time when she is becoming more and more aware of her differences, mainstream school would have been a very different story.

Holly is a Trojan – she has a a medical appointment on average once every two to three weeks: physiotherapist, occupational therapist, psychotherapist, paediatrician, ophthalmologist, speech therapist, orthopaedic surgeon, plastic surgeon, splint fittings and so on; but like most kids, she keeps very positive about it all and very rarely complains. She even spent her last birthday in a wheel chair having had the tendons in her leg relocated to stop her foot from twisting in – so this year she’s going to have a big party!

So this is why the running started and the fundraising began. Over the years Chevs and Jamie plus a band of eager folk, who Holly has inspired, have raised over £70,000 for charity: with so many different facets to Hemiplegia, Scope, Mencap, Hemihelp and Great Ormond Street Hospital have all benefitted from the funds raised. They feel particularly indebted to GOSH as it was a life changing operation and the whole family have never looked back.

Hemihelp was set up in 1990 by a group of parents of hemiplegic children and needs to raise around a quarter of a million pounds every year – it has been a invaluable source of help and support for Jamie and Chevs.

So where would your money go?

  • £10 answers five calls to their helpline from many parents in urgent need of support
  • £20 brings an issue of the Hemihelp magazine to ten families – often described as a lifeline.
  • £50 pays for a set of stabilisers to help a child learn to ride a bike
  • £200 pays for a home visit to two families struggling with hemiplegia
  • £500 helps pay for a children’s music, drama or creative movement workshop (the kids LOVE these!)
  • £2,500 pays for a conference for parents – one of the things we found most valuable earlier on
  • £10,000 pays for a ‘Try It’ Activity Day

So – lets see if we can make it a ‘Try It Just Because It’s There Activity Day’!