Eight-year-old Joshua suffered a Stroke as an infant leaving him with permanent brain damage. He has right-side hemiplegia and has also been diagnosed with ADHD.
His dad, Edward, says:
“Joshua was born a healthy little boy, but when he was just a few months old we started to notice that he seemed to favour his left hand side and then he started having unusual jerking spasms.
“We took Joshua to the health visitor and the GP several times to voice our concerns and even ended up in A&E, but we were assured there was nothing to worry about. He was putting on weight and seemed to be doing well.
“As first-time parents it’s difficult to know what’s a ‘normal’ part of development, but we felt in our gut that something wasn’t right. The spasms were becoming stronger and more frequent, sometimes 30 to 40 in the space of an hour. Joshua was clearly very distressed and was inconsolable at times. So we went back to A&E and were seen by a senior consultant who diagnosed infantile spams and he was immediately put of a course of steroids, to manage the spasms.”
However, the seizures had caused irreparable damage to Joshua’s brain and at five months old he was diagnosed with Cerebral Palsy.
“When we got the diagnosis our world was turned upside down. I had to give up my job as a pastry chef to become Joshua’s full-time carer. He has complex needs, both in terms of his mobility and the challenges that come with ADHD, so he needs full-time one-to-one support in school.
“Life for us as a family can be a struggle and when our twins came along the dynamics changed again.
“Joshua is at his happiest when he’s outdoors and always loved going on bike rides. Before we had the twins we had a trailer bike for Joshua, but he’d outgrown it and as we’re now a family of five getting out on our bikes became an impossibility.”
Edward reached out to Children Today for support towards funding for a larger trailer bike so the family could once again enjoy their favourite hobby together, and the charity pledged £1,898.
“It’s been great to be able to get out and about together as a family again. The twins go in Joshua’s old trailer and I tow Joshua along. We’ve already had lots of family bike rides and cycled to visit the grandparents. Once the warmer weather kicks in, we’ll be out on it all the time!
“The day it arrived it was pouring with rain, but Joshua was so excited he insisted on sitting on it in the living room watching TV!
“It’s also really nice for me and Joshua to get outdoors and have some one-to-one time on the bike occasionally.
“Raising a child with a disability can be hard at times and we often feel like we have to fight to get the care and support Joshua needs. Sometimes it feels like everything is a battle. So, we really appreciate the support from Children Today. To some people it might seem trivial, but it means the world to us as a family.”