Category: HemiHelp

We’ve created a new animation for families caring with a child with hemiplegia to share with their child’s school and other people that work with them to help them understand the condition better.

Watch the animation now.

HemiHelp – the charity that supported families with children who have a condition called hemiplegia – became part of the Contact family in 2018.

Since then, Contact has continued to support families living with hemiplegia with vital information and resources.

Sign up to receive our free HemiHelp e-newsletter full of the latest information and news for families caring for a child with hemiplegia including our upcoming parent workshops and family events.

Dad of twin boys, Graeme Longstaff, originally planned to complete the London Marathon next weekend running with an incubator (aka the ‘runcubator’) – until he discovered that the event’s rules didn’t allow it.

Undeterred , he changed his plans to complete the 26.2-mile distance running between the 3 hospitals where his twin boys Ted and Bert were born 9 weeks early. They spent their first few months of their lives in hospital until they were strong enough to come home.

It wasn’t until Ted was two years old that he was diagnosed with hemiplegia which affects his right arm and leg.

Graeme said: “I’ll be doing my run on behalf of two charities: Contact and Bliss, who support families with premature or sick babies. We were told very early on that the boys many have some issues in the coming years being as they were born so early. Because of this, the first few years of their life was spent going to appointments to consultants , physiotherapy, scans etc. Contact and Bliss are two great charities who help people when they have no clue what is happening and are always there to offer help, guidance and support. To us they have been invaluable and I’m sure that’s the case for many others out there.”

Ted and Bert are now energetic 7 years olds.

Graeme continues: “Today, Ted is a super-happy little dude. He might not be able to climb trees and ride bikes like his twin brother, but he’s a bright kid with a positive outlook and huge passion for football which he plays every Saturday morning.  There’s been many up and downs, head bumps by the dozen along the way as well as lots of trips for various leg splints to be made and trialled to help Ted from tripping over himself. We wouldn’t be where we are today without all the help and support from HemiHelp and their online community. From funding support to day trips to just being there to listen when no-one else will, they have been such a big part of our family and will remain so.”

Help raise vital funds for Contact and Bliss


You can donate to support Graeme’s marathon distance run to raise vital funds for Contact and Bliss at www.gofundme.com/f/theruncubator

If you would like to join Team Contact and run the London Marathon for us in 2023, get in touch today – email [email protected]. We have places and would be there to support you in your fundraising journey from the word go!

Find out about other ways to fundraise for Contact.

Our HemiHelp magazine is back!

And it’s online! To read more stories like this, make sure you take a look at our new online Hemihelp magazine

Take a look at the new HemiHelp section of our website dedicated to families who care for a child living with hemiplegia.

As well as finding support for you, your family and your child – including our unique My HemiCheck online tool – you’ll also be able to find the our online HemiHelp magazine.  

We’ll add more stories to our magazine every month so keep checking back to hear inspiring stories from people like Thomas, who told us about his experience of growing up with hemiplegia.

Sign up to receive your free HemiHelp newsletter

Following a fantastic focus group session we held earlier this year with parent carers who looked at all our online HemiHelp advice and gave us valuable feedback, we will now be publishing a regular e-newsletter packed with the latest news and information for families.

Sign up now to receive your free new HemiHelp e-newsletters sent directly to your inbox. We’ll be sending the first one out at the end of September.

About HemiHelp and Contact

HemiHelp was set up in 1991 by a small group of parents whose children had hemiplegia. As a charity, HemiHelp supported families for 26 years until 2018 when it joined forces with Contact and became part of the Contact family.  Since then, Contact has continued to support families living with hemiplegia with essential information, opportunities to connect with other families, and resources, while benefiting from the wider services offered by Contact.

Hemihelp logo

We’re holding a fantastic free family event at the Woodland Adventure Zone in Sherwood Forest near Nottingham on Monday 8th August.

Assisted by qualified and experienced instructors, this is a chance for children with hemiplegia and their families to learn some new skills and take part in the centre’s fully accessible outdoor activities like the 90m zip-wire, climbing wall and abseiling.

Get set for a woodland adventure for the whole family

Siblings and parent carers are welcome to take part in activities too – please book a free place for each person attending on Eventbrite for our morning activity session on Monday 8 August, 9:30am-12:30 or our afternoon session on Monday 8 August, 1-4pm.

“Thank you so much for arranging the Forest Adventure experience. Our family had a wonderful day experiencing activities we never dreamed were possible for us ALL to enjoy together as a family. The instructors were amazingly patient, understanding with a wonderful can-do attitude making the afternoon run seamless.”

Parent carer who attended a similar event we ran at the Woodland Adventure Zone in March

Places are limited so book your place now to avoid disappointment!

Please note that the Woodland Adventure Zone’s zip wire, abseiling and climbing wall is suitable for thrill-seekers aged 7 and up. Younger children aged 5 and over are welcome to come along though and join in games and bushcraft.

This family activity day is one of Contact’s Better Together events which aim to bring families together to share unique experiences, have fun and make friends and build support networks.

Would you like to hear more about our plans for the year ahead for families living with hemiplegia? Share your views with us and you’ll help us improve our information and advice services for you and other families like yours.

We’re looking for 10 parent carers who care for a child or young person aged 0-18 with hemiplegia to join an online focus group on 9 June where together we’ll review some of our key information about hemiplegia.

By joining us you’ll be helping us make sure we’re supporting our HemiHelp families with the advice and information they need and want. As a parent with a child with hemiplegia, your involvement in this focus group will help us to create content for our website, newsletters and our social media channels that better supports you and other families like yours.

When is it taking place?

The session will take place on Thursday 9 June from 10:00 to 12:00, via Zoom. We’ll provide details on how to join in advance of the session.

Who we are looking for and how to apply

Please consider joining us if you are a parent carer of a child or young person aged 0-18 with hemiplegia. You can apply to join the focus group by filling in this application form.

We want to ensure the focus group includes participants with range of experience and backgrounds including gender, ethnicity, and geographical location. If you have previously provided us with this information (for example if you were a member of our previous survey panel), then this may be used to ensure the group is representative.

What will I do?

What if I’m not selected for the focus group but still want to share my views?

Throughout the year we run surveys about our information and advice services and we’d love you to take part. You can find out more about our surveys through our newsletters and joining our Facebook group.

GB’s first-ever Paralympian badminton champion, Dan Bethell, is determined to use his success to inspire other children with disabilities to embrace the benefits of sport  – and has asked us to help him spread the word!

Dan, who won an incredible silver medal in the Tokyo 2020 Paralympic Games, has right-sided hemiplegia.

He says: “HemiHelp, part of the Contact family, is an amazing charity which gave myself and my family lots of support and information over the years. With their help, I want to get the word out to the next generation of Paralympians: sport has the power to positively change people’s lives, no matter what your circumstances.”

Read Dan’s diary documenting his Paralympic experience.

Need more inspiration?

Take a look at our information about sports and fitness bodies across the UK which provide opportunities for children, young people and adults with disabilities.

If your child has been inspired by Dan’s badminton success, there’s a series of disability Para-badminton festivals taking place across the country  right now – why not try it out?

Find out more about England Badminton Association for Disabled EBAD and Badminton England, and make sure to follow @parabadmintongb, @officialbadmintonengland and @dannybb1996 on social media.

Contact’s guide to play and leisure

Take a look at our Holidays, Play and Leisure page which provides some information about what play, leisure, and short breaks options may be available, and where to find more information. It also  has information about arranging holidays for disabled children and details of organisations which provide grants for these types of activities.

Prizewinner Romana reading her copy of Oti's book
Prizewinner Romana reading her copy of Oti’s book

Well done to the winners of our competition to win a signed copy of BBC Strictly Come Dancing star Oti Mabuse’s new disability-inclusive children’s book, ‘Dance with Oti: The Bird Jive’!

Congratulations to Alexandra, Harry, P James and Romana!

‘Dance with Oti: The Bird Jive’ follows a class of children as they meet at Mrs Oti’s dance studio for the very first time. Some are nervous, some are excited. We follow them as they learn The Bird Jive and are surprised by an unexpected visitor!

Oti worked with our HemiHelp team to research her character Martin, who has hemiplegia, and Naira, who has a cochlear implant.

We were lucky enough to have four signed copies to give away in a raffle. A huge well done to our winners, including Romana above!

Oti says of her book: “I wanted my book to make all children feel included and show that dance is for everyone! I believe my dancer Martin is the first character with hemiplegia in a non-specialist picture book.

“As part of my research, I got in touch with a fantastic charity called Contact, which supports UK families with disabled children – whatever their disability or medical condition – with the vital advice and information they need.

“I was blown away by all the services Contact offers families just like Martin and Naira’s in my story. As well as support for families living with hemiplegia through the charity’s HemiHelp service, Contact also offers a free parent helpline, workshops, parent guides, and the other practical and emotional support which Contact provides to thousands of families every year.”

On Wednesday 7th July, Lizzie from HemiHelp was presented with a giant cheque for £2,281 by members of Wellingborough Prep School’s Year 5 charity committee.

The school has raised an amazing £2,800 in total for Contact’s hemiplegia services over the past year. Events have included a Wheelathon (scooting around the school corridors), pizza night, and Wear Red day during lockdown!

The school decided to support Contact after a student with hemiplegia started there. They received HemiHelp’s Schools Pack, which helps mainstream schools support students with hemiplegia.

The students really enjoyed the opportunity to be creative and come up with new ideas to raise money, and they were delighted to have someone from Contact come to thank them in person. In fact, one actually thanked us for the opportunity to fundraise!

Lizzie said: “It was so great to meet the children and be able to explain what a difference their amazing donation will make to families living with hemiplegia. The fundraising ideas they’d come up with were so creative, and what an incredible total given that they’d been in lockdown for a lot of the year.”

If you or your child’s school are interested in fundraising for Contact, please get in touch with our fundraising team at [email protected]

Oti with a copy of her book

Oti Mabuse, star of BBC’s Strictly Come Dancing and ITV’s The Masked Dancer, has released her first children’s book. And working with Contact, Oti has made her book disability inclusive – fantastic news!

‘Dance with Oti: The Bird Jive’ follows a class of children as they meet at Mrs Oti’s dance studio for the very first time. Some are nervous, some are excited. We follow them as they learn The Bird Jive and are surprised by an unexpected visitor!

Oti worked with us to research her character Martin, who has hemiplegia, and Naira, who has a cochlear implant.

Oti says: “I wanted my book to make all children feel included and show that dance is for everyone! I believe my dancer Martin is the first character with hemiplegia in a non-specialist picture book.

“As part of my research, I got in touch with a fantastic charity called Contact, which supports UK families with disabled children – whatever their disability or medical condition – with the vital advice and information they need.

“I was blown away by all the services Contact offers families just like Martin and Naira’s in my story. As well as support for families living with hemiplegia through the charity’s HemiHelp service, Contact also offers a free parent helpline, workshops, parent guides, and the other practical and emotional support which Contact provides to thousands of families every year.”