Living with SPG11

Adam's Story, by Mum Wendy

Adam is 33, he has Complex Hereditary Spastic Paraplegia. This is a rare degenerative condition, for which there is no cure. So rare that he was not diagnosed until 2015, after previously being wrongly diagnosed of cerebral palsy at the age of 17. It is slowly robbing him of his mobility and cognitive skills, his sight, his speech and his ability to swallow, he is now a permanent wheelchair user, fully dependent on his family for all his care needs.

Adam has struggled his whole life. From an early age I noticed that he was not keeping up with other children of his own age and behind in hitting his milestones. It was at the onset of adolescence that things started to get really bad, he was in a lot of pain and suffering weakness in his legs. Adam has had to endure several operations and painful procedures during his life, including on his eye when he was a baby, on his feet to straighten them and make it easier for him to walk and lumbar punctures.

Sadly, because of being 'different' Adam suffered bullying at school and eventually stopped going altogether and was unable to finish his education.

Despite all his problems, Adam remains a cheerful, happy lad, who loves animals, his family and friends and would do anything for anybody. Unfortunately this had led to some people taking advantage of his generosity and vulnerability. It breaks my heart and leaves me feeling helpless that I can't make everything better for Adam and that he will not be able to achieve a lot of things in life that most of us would take for granted.

For the last 2 years Adam has been living in our conservatory/dining room because he can no longer use the stairs, he has had no access to bathroom facilities during this time.

We are having built for Adam, a room he can call his own, with an en-suite wet room, where he can have his own space and privacy and indulge in his favourite hobby of watching films in peace! This should be ready for him to move into soon.

My husband, Craig, Adam's step father and I, have exhausted our own resources on Adams' room, we have received contributions from Leicestershire County Council and the Royal British Legion, for which we are eternally grateful.

Unfortunately we are unable to complete the project properly without your help, dear readers. Presently, in order to join us in the dining room and kitchen, Adam will have to go outside in his wheelchair, and back into the house via the dining room. We are hoping to raise funds to construct a weather proof structure so that Adam can join his family for meals and quality time in a safe and comfortable way.

Thank you for taking the time to read Adam's Story. Please donate if you can, even if it's just a couple of quid. Please share to help us to make life easier for our lovely lad Adam, he really needs and deserves a break in life.