Harrison’s Story

 “If we didn’t have the support from Beams, I honestly don’t know what we would do! Beams are only a call away if we need family advice or access clubs during the holidays. We don’t see Beams as friends; we see them as extended family!” 

Harrison is 15 years old has 1p36 deletion syndrome, global development delay and epilepsy. He is part of a very close happy family and lives with Mum, Dad and younger brother.

1p36 deletion syndrome is a genetic disorder caused by the loss of a small piece of genetic material from a learning chromosome.

The signs and symptoms of 1p36 deletion syndrome vary among affected individuals, but may include; intellectual disability, developmental delay, speech and language delay, feeding difficulties and seizures. 

Harrison is non-verbal so communicates using an eye gaze; he can walk but loses balance easily, he needs 1:1 support for feeding and getting dressed. Harrison’s disability means as a family they are quite limited as to where they can go, is it wheelchair friendly, will it be too loud, too crowded.

Day-to-day life can be very challenging for Harrison’s family; he needs lots of attention and extra care. Despite these challenges, Harrison is described as a ‘cheeky teenager’ and loves horse riding every Saturday morning, swimming and bouncing on the trampoline in the garden.

We have supported Harrison for many years, he attends Dragon’s Retreat respite overnight care once a month and our Kids Camp Holiday Club for children requiring one to one care enjoying trips to the seaside, sailing and other fun activities.

Beams have been able to make a real difference for Harrison and his family, it has given him some independence and while at Dragon’s Retreat the family can go away or enjoy activities with Harrison’s brother that they would normally not be able to do.

Harrison’s story is a reminder that even children with the most complex disabilities can thrive and reach their full potential with the right support.