HemiHelp provides information, support and events for children with hemiplegia, their families and the professionals who support them. We don't receive funding from the government and rely entirely on voluntary donations. The money you donate will make a life-changing difference.
Summer is 11 years old, has right-sided hemiplegia, loves reading, the cinema, swimming and has recently discovered a real flair for archery.
After Summer’s diagnosis at 10 months, her mum Cherie says “we muddled along with physiotherapy and occupational therapy but not much was explained to me about her condition and all the ‘unseen disabilities’ associated with hemiplegia.” Summer is actually affected by a number of these issues. As Cherie says “When I found out about HemiHelp I was so relieved and happy to know that not only were there other parents and children out there like us, but that there was actually a whole organisation dedicated to helping us.”
It was when Summer began experiencing real problems at school, that Cherie contacted HemiHelp for support. “The teachers didn’t understand Summer or the condition so I called HemiHelp and they sent out the amazing Jo (HemiHelp Home Visitor). She came to see me at home and made me feel very positive about what we could do to make Summer’s school life easier. She also went to Summer’s school and trained the staff on how best to support Summer - it really helped. A year later, Jo’s help was invaluable in getting Summer a statement for secondary school.
Hemiplegia is still such a misunderstood condition but with HemiHelp’s constant fight and brilliant Awareness Week I really think we are on the way to making our children be seen and heard.”
Jeandre is 9 years old, has left sided hemiplegia and enjoys football, athletics and playing on his Xbox. His mum Jackie says “Hemiplegia is one of those conditions that are not always very noticeable and people don’t always understand the frustrations and isolations that sometimes come with them.” Jeandre’s parents are like the majority of people who haven’t heard of hemiplegia and so they decided to get involved in Hemiplegia Awareness Week and ordered an Awareness Pack from HemiHelp.
During Awareness Week, Jeandre made a presentation to his class about his hemiplegia, answered questions and gave out leaflets and postcards. His Headteacher, Mr Williams said “Jeandre’s presentation to his class was outstanding and everyone gained a greater understanding of his condition and how it affects his everyday life.” Jeandre himself said “I think my friends understand me better now.”
This gives just a snapshot into Awareness Week activity. In fact 200 members requested Awareness Packs and many people participated in awareness-raising activities. By organising and providing the Awareness Week framework, HemiHelp encourages its members to mobilise the support of their local networks and communities. Through lots of small-scale activities, we are actually making an impact on a much larger scale. In this way, we can all work together to significantly raise awareness of hemiplegia, change attitudes and improve understanding and acceptance.
Toby is 23 and currently in his work placement year at university. He says “I joined HemiHelp's mentoring programme because deep down I didn’t feel very confident and I wanted to come up with strategies for university and the workplace.”
His mentor is Chris, a 27 year old graduate who works as a public sector administrator and also as a volunteer carer for a charity. To prepare for the role, Chris attended a HemiHelp mentors’ training day. Chris and Toby then met and set up a programme of development with goals and a time frame for progress. Periodically, the goals are reviewed and new ones are set with the help of HemiHelp’s Transitions Advisor.
Chris and Toby speak for about three hours a week. Toby says “I have had an excellent experience and feel very supported by Chris. It has been great to have a listening ear to offload any issues I have had. It has enabled me to develop strategies in my personal life and understand the hidden aspects of hemiplegia better. I have gained more confidence, an ability to talk about my hemiplegia openly and accept it in myself.”