Adam is a wonderful human being who has had a difficult start to life! through no fault of his own.
Like all our children they are very precious to us and Adam survived the odds and was born with quadriplegic cerebral palsy, epilepsy, cortical visual impairment (blind) but to name a few serious chronic disabilities. He is wheelchair bound, non verbal and feed through a gastrostamy straight into his stomach.
Adam is now 10 and half years old but around 2012 when he was 7 years old I noticed that his spine looked perculier. Despite voicing my concerns the health professionals involved continued to dismiss me. It did not stop me from representing my voiceless son but my worse nightmare had started and it became apparent that he had developed scoliosis (curvature of the spine). In particular the lumbar part.
In 2013 we gave consent to Great Ormond Street Children's Hospital to carry out a magnetic rod procedure as Adam's spinal x-ray showed his spinal was curved at 40 degrees angle. Sadly Adam was not able to have this procedure as our home is not suitable for Adam's post operation discharge as physically carrying him carries the risk of the rod snapping in his back.
We have never withdrawn our consent and we are now in 2016 and Adam's spine has reached over 70 degrees despite wearing a spinal brace for almost 4 years!
I have been left to carry Adam who is 34kg in his spinal brace up and down the stairs and within my home since 2012 with no regards for his life and leaving us in immediate risk.
He now requires a spinal fusion procedure which is much more of an evasive procedure which he still cannot have as the house has not been adapted. Whilst the local authority exert their suffocating hold on my son's life because we are housed in social housing! They have made it apparent it will be a waste of tax payers money to adapt the home of a profoundly disabled child and leave him without life saving surgery.
This is the state of affairs in the 21st century.
I have been fighting for Adam's rights for the last 10 years and firmly believing that it's the responsibility of statutory bodies involved to provide a solution and look after the most vulnerable members of our society it has fallen on me to reach out to my friends and family who have known our plight and our long standing battle with our local authority for a grant. Sadly a grant that will not provide Adam with what he so desperately needs. Failing to pull together available resources to assist me and my family. My health is deteriorating and I am asking for help from the British public to stand in solidarity with the most profoundly disabled children in our society who are kept out of mind and out of sight.
Adam was featured on BBC2 documentary called "This is Tottenham"
This has given us strength and motivation because of the enormous wealth of support from our local community and the public at large. I have now finally found the courage to start fund raising as this current situation cannot continue! I am no longer afraid to stand up and be counted!!
The adaptions Adam needs is a through floor lift! A height adjustable bath! Wheelchair access around the house so he is included in family life! Hoisting facilities! Changing facilities for personal care! So he can be managed with dignity and compassion and not man handled.
Help make it happen by donating to fund Adam's major adaptations
needed to his home to allow him to have his surgery.