Our journey started when Diamo was born in 2003. He had a difficult birth due to medical negligence, which led to cerebral palsy. Sadly, we lost him unexpectedly in March 2012.
Diamo was diagnosed as having severe developmental delay, he was quadriplegic and had very little head control. He needed extensive treatment to help him with basic functions such as eating, sitting and looking around, which included him having a multitude of orthotics braces and gators; DAFOs, hand splints, TLSO and a Second Skin night garment. Without them he would have had a very difficult daily routine. And as he grew, he had to endure constant visits, castings and fittings which caused him great distress and anxiety. You can imagine this also had a massive impact on our family life as well.
Caring for his wellbeing was challenging enough, but getting his orthotics right was another challenge all together. It wasn’t really an option as not having orthoses made caring for Diamo even more difficult. He couldn’t eat properly as he couldn’t sit up straight, he kept slipping off his seating system, these included his chairs and wheelchairs.
Our lives as a family revolved around when is the next orthotics appointment? Are they going to get it right this time? Or shall we brace ourselves to come back to appointments, again and again?
The process of getting the right equipment and wearables was very long and frustrating. But when the end result was good it was worth it. But more often than not the braces came a few months after the measurements were taken, by which time Diamo had outgrown them. This meant we either made do with a bad product or had to go through the whole process again.
As another parent said to us recently, ‘we just get what we’re given’. We think that’s simply not good enough.