National Inclusion Week is a yearly event that takes place every September. It’s dedicated to celebrating inclusion and is a cause very close to our hearts at Cerebra. We passionately believe that all children should be able to participate in everyday activities that are so often closed to them.
In June this year our epic Relay Your Way across Britain championed the 1.5 million young people in the UK with disabilities, including half a million children living with brain conditions. The Relay sent a powerful message that sport, adventure and play should be inclusive to all.
Divided into 250 stages stretching from Glasgow to Windsor we were joined by some incredible young people and their families along the way. They passed the specially designed baton on in different ways, including wheeling, cycling, frame running, tandem bikes, guided running and paddleboarding!
One of those amazing families was Donna and Mark and their two sons, Noah and Ollie. To help us celebrate Inclusion Week Donna tells us their story:
“My name is Donna, my husband is Mark, and we have two wonderful boys; Noah and Ollie. Noah is 9 and Ollie 5. Noah is a really caring young man who adores Harry Potter, being outside, running, cycling and being with family and friends. Ollie is a fun-loving, highly curious young man who loves nature, animals and anything farm related.
Noah has Beck Fahrner Syndrome which is a rare genetic condition, caused by a gene variant of the TET3 gene. It’s associated with developmental delay, learning disabilities and autistic features. It took us four years of asking for support and help from medical professionals to finally get to see a geneticist and receive the diagnosis. Beck Fahrner is such a rare diagnosis at present, there are no specific networks here in the UK to help us as a family with this diagnosis, but Cerebra have been that support for us.
Noah struggles with sleep most nights. He is very unsettled and then finds daytimes challenging when he is tired. Noah thrives on routine and requires careful planning for any event or changes in routine. Noah cannot always manage things that other children can, which means that he cannot participate in activities in the same way as his peers can. We enable him to participate in as many activities as possible, but he can be limited by his abilities and confidence. Joining in sports teams and such would not be possible as he would not understand the rules in the same way as his peers, and his abilities would be different due to his developmental delay.
What inclusion means to us
Inclusion for us means enabling Noah to do as much as he can and adapting things to enable him to do that to the best of his ability. That means that we want places to be inclusive so that Ollie can do things with his brother. They love to be together and often things become age-determined rather than ability or developmental level-determined, which seems unfair for Noah and also for Ollie who wants to do things with his older brother.
For us, inclusivity is about equality of opportunity regardless of ability or limitations and we often find that due to Noah’s developmental delay this is not the case in many places that we go.
How Cerebra has supported us
Cerebra was recommended to us by a friend who is a school nurse, initially as a place that may be able to help us with Noah’s sleep. We watched the webinars on sleep to start with and soon realised all the other areas that Cerebra could provide support. We have used the library, which has been an invaluable resource for myself and my husband. It’s helped us to understand better how to help navigate Noah’s path with him, but also to ensure that Ollie is as supported in the journey of being the sibling of a child with developmental delay and learning disabilities. Both the Sleep Service and Library have been invaluable support. It is also just wonderful knowing that there are a team of people promoting awareness and supporting families like us.
Our Relay Your Way adventure
Relay your Way was a highlight of our year. I initially signed up as a bit of a challenge for myself. Then a few friends decided to join me. They have all been through the journey of Noah’s diagnosis with us as a family and supported from the peripheries. Then I asked Noah if he wanted to join me. I thought that he might do the first few miles and the last few, with my husband transporting him between the two points in the car.
We practised on the tag-along bike over the months leading up to the event and Noah’s confidence grew. He can ride a bike independently however he is a bit wobbly and near the road this would not be sensible, so we elected for the tag along. This way he could also rest when he needed to as well.
On the day, Noah was excited and nervous – we all were to be honest. It was 30 degree heat when we set off from Salisbury. It was one of the most amazing days. Many of Noah’s school friends and families joined us on route, including Ollie who was at the ready with the water pistol to cool us down at each stop point we had! We were cheered on throughout the route by this amazing cheer squad and the Relay your Way team. We finally crossed the finish line and we were all elated. Noah had not stopped smiling the whole way!
It’s really important to raise the voice of those who cannot do it alone, and to promote inclusivity within society. We are so grateful for Cerebra raising the profile of inclusivity in sports. Sadly, there are no inclusive sports teams near us, but it has driven us to try more things with Noah. Thank you to the whole Cerebra team for all they do to support families like us.”
Jess Camburn-Rahmani, Cerebra CEO:
“At Cerebra, we understand that true inclusion begins with a mindset. Children with neurological conditions are not defined by their challenges, but by their potential to participate fully and equally in society. We are delighted that Noah and hundreds of other young people were able to take part in Relay your Way – the event was all about achieving something magnificent together as one community in all of our wonderful diversity. And after 2500 joyful kilometers, we did it! But we know that the work is not done, and Cerebra will continue to work hard to challenge barriers to inclusion and shape a society where every child is valued and belongs just as they are.”
