This is Spencer’s own page of achievements. Spencer is now 26 years old and living his best life …. Having fun of course and keeeping everyone on their toes!
Spencer’s condition is UPF3BG mutation. the symptons include Disgenisis of the Corpus callosum, Hypotonia, Keratakonus, Dystonia, Gilbert Syndrome and severe developmental delay.
Most things we all take for granted, the simple tasks for others, are often impossible for some. Spencer’s achievements often go unnoticed by him! Even when he took his first steps at nearly five years old he didnt realize his massive achievement.
He seems to understand the basic things we say but we cannot be certain. Really it is a guessing game at times. Mostly he is very happy and enjoys a full life with lots of holidays in the sun and being out and about.
Things Spencer does for Fun!
- Going to Hunstanton – one of his favourite places he loves it there so he can visit the sealife centre and his nanny and grandad.
Spencer’s Favourite Words!
Due to his condition Spencer can only say a few words and these are the words he says a lot! However he will babble away in his little own world.
- Mummy
- Ghosts
- Pirates
- Ready
- Party!
- Whats that?
- Nanny
There are not many people who can look after Spencer. I left him in charge with my friend Rachel with no instructions! That was fun too. Spencer had a free for all, and he knew it too.
Spencer’s Achievements
Spencer has achieved many goals – his latest are his Duke of Edingborough awards
- Duke of Edingborough Bronze Award – being able to take his own socks off ready for bath time
- Duke of Edingborough Silver Award – saying the word ”ghost” while running around the house with his skeleton outfit.
Spencer loved his days at school, his teachers had the patience of saints! He also loved to attend the after school club daily.
Spencers goals at school were to use PECS communication system, which is a card to communicate his needs to request drink or food and to play indoors or out. This is proving to work well. It is all very small steps. It amazes me when I watch other children,how quickly they learn even without being taught!
Spencer has now moved to HFC care in Lincoln, I visit every week and he has settled well, im sure he misses his Mummy as he is always calling for me! He has started his future adult life within a micro community with other young adults like himself. He has carers full time and a core team of people to work with him to fulfill his future goals.
