Thanks for taking the time to visit my Angelman Syndrome JustGiving page.

My brother, Bruce, and I are going to cycle in the Joberg2C 2022 event(https://youtu.be/YXvIdqUKq24) This is a gruelling 900km off-road mountain bike ride over 9 days in South Africa from Johannesburg to the coast. There will be about 1000m of climbing each day. We will sleep in tents along the way, but the spirit will be great, the food will be good, the scenery will be stunning and the cause is worthy!

We were going to be riding in 2020, but COVID came along and ruined that for 2 years. It is all looking good for 2022 and we are back in training for the third time!!

My son Matthew is 10. He has Angelman Syndrome. He is a delightfully charming young boy with a great sense of fun and a contagious laugh. He gets great joy from many things like theatre, music, swimming, chocolate and parties. Above all he loves his friends and his family. But he cannot speak. He tries his best with Makaton sign language and an iPad "talker" with icons and speech generation, but this is hugely limiting and frustrates his desire to communicate and engage with other children and adults. His co-ordination is restricted and he also has learning disabilities. The other big impact for him and the whole family is his very disturbed sleep that has been present since birth.

However, we count ourselves lucky every day. Many children and adults with Angelman Syndrome have worse cognitive and physical effects than Matthew does and many also get seizures. We have also had tremendous support from a specialist speech and language school with loving teachers and carers that he adores.

He has brought us so much joy, love and laughter, but has also brought us humility and taught us to value the inclusivity of our society.

Angelman syndrome (AS) is a rare neuro-genetic disorder. It occurs in one in 15,000 live births. AngelmanUK provides a lot of support and advice to many exhausted and sometimes desperate parents and siblings. The sleep, speech, seizures and behavioural issues can be daunting. They also support research. There is a lot of research in gene therapy that is in the early stages, but provides some hope for treatments in the coming decades.

www.angelmanuk.org

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