“Having a disabled child is like being very lost in a world you have never been in before.”
Mark has served 18 years in the electrical industry. He lives with his wife Lisa, in their own home in York with their 7-year-old daughter Lily, 2-year-old son Ben and 6-year-old son Max, who is severely disabled.
Max was born very prematurely at 26 weeks gestation. At 1 year old, he was diagnosed with Quadriplegic Cerebral Palsy, Dystonia, and Chronic Lung Disease. Max is wheelchair bound and unable to do anything for himself. He cannot see or communicate. Mark and Lisa were lifting Max everywhere in the house, including up the stairs. As he grew, he got heavier and more difficult to lift, which became a safety issue.
Mark and Lisa needed a full 2-storey extension to their home to enable a through floor lift to be built, which would transport Max up to his bedroom and wet room. The extension would also include a separate storage room for Max’s equipment (2 x chairs, standing frame, walking frame, specialist bike etc.). The total cost of the adaptation works, including the council fees, is over £80. Mark and Lisa were awarded a Disabled Facilities Grant of £30k, a council loan of £10K (secured against the property), and a further £4K from other charities. This, combined with Mark and Lisa’s own savings of £10K, still left them with a shortfall of £26K.
In addition to this adaptation, the family was quoted £21k for a loft conversion. Max and Ben were currently sharing a bedroom, but this would not be possible once the bedroom was converted for Max’s needs. The through floor lift would be coming up into the bedroom and the ceiling track hoist would be fitted along with Max’s hospital bed and wheelchair, meaning no room for a bed for Ben. The couple had extended their mortgage to meet this cost.
Max also has ABR Therapy for £5k per annum, but the family try to fundraise to meet part of this cost. There is always additional expenditure in caring for a disabled child, and Max will need care for the rest of his life. Mark and Lisa were in their financial position simply because they were trying to make life better for Max as any parent would.
The Electrical Industries Charity agreed to meet the shortfall of £26K, allowing Mark and Lisa to get this essential expansion done on their home. On top of this, we teamed up with Edmundson Electrical through the EIC’S Practical Support Programme (PPP). Edmundson agreed to provide the family with essential electrical equipment needed to get their renovations done and ease some of the financial pressure.
Lisa says: “There are so many ways to say thank you, but none of them will express how we really feel. When Max was born so premature we were uncertain if he would survive. To then be told that Max would never walk, talk and would be confined to a wheelchair brought a whole roller coaster of emotions. Having a disabled child is like being very lost in a world you have never been in before.”
“As a mum, I felt so helpless, scared and worried for Max and I just wanted to wrap him up in cotton wool and protect him from everyone. After fighting for the last six years for help getting Max everything he needs to move forward and support him in our world, we have become a family that is used to being told NO. Most of the time we feel every day is a fight.”
“So when someone like The Electrical Industries Charity & Edmundson Electrical say YES all the locked up emotions suddenly come flooding out. We didn’t stop crying for a whole week — someone actually wants to help us. You will never know or understand how much this means to us and you have suddenly made our lives a whole lot easier and for that we are truly grateful.”
“Having the electrical equipment Edmundson’s have supplied for Max is fantastic. I would not have known where to start. It has worked really well between the electrician and Edmundson’s. We thank you from the bottom of our hearts.”
