This is our dear friends son, Lawrence. He lives with a condition called Angelman Syndrome.
Please read his mum’s story of their journey.
Please also join us in raising awareness of this condition. Imago Interiors will be hosting opportunities to also raise money for Angelman Uk during 2023…
This is our son Lawrence. He is 6 years old, and he is cheeky, happy and extremely cuddly. He faces life with enthusiasm and a giggle but life for Lawrence is not always easy… He was born with Angelman Syndrome – a neurological disorder that affects 1 in 20,000 as a result of disruption to a specific region of a specific chromosome.
Angelman Syndrome is always referred to as a rare condition but what has surprised me is the size of the club that Lawrence has joined. Lawrence’s trials and tribulations are rare; but not so rare that this difficult syndrome should go unnoticed.
For those of us who love an “Angel”, we have an awful lot in common… This diagnosis means that we are united in loving an individual who has severely delayed development, who is completely non-verbal but yet can inevitably be identified by their happy, excitable demeanor and frequent laughter. There are so many shared experiences and challenges beyond this; a high chance of epileptic activity, gastric issues, mobility difficulties, communication conundrums, a strong resistance to sleep – the list goes on and on. This is without delving into the minefield of how to support a loved one who will never be able to live independently into a happy, fulfilling and safe adulthood.
This is why the support of Angelman UK has been so vital to us and to so many families living with this disorder. The knowledge and experience of others is gold dust and so readily available thanks to this charity. Aside from the work that the charity does in linking families together and providing us with so much valuable information, they work hard to raise awareness of the syndrome in the wider world. Crucially, they also put a large chunk of their funds, along with other Angelman organisations, towards critical research. It is exciting to know that nationally and globally, there is a vast amount of research being conducted. Multiple groups are working at a genetic level, trying to solve the mysteries of Angelman syndrome and unlock, far beyond the horizon though it may be, a cure. On top of this though, important studies are being conducted around the many challenging characteristics of Angelman syndrome that impact families like ours every day.
Lawrence is a boy who brings his contagious smile everywhere he goes, but the battles that come along with his diagnosis are very real and can certainly feel overwhelming at times. The best weapon that we have right now is Angelman UK and we thank you for any contribution to keep this lifeline going for us, and so many like us, dealing with this rare but not so rare life-changing diagnosis.