Shropshire care company, Komplex Care, is hosting a charity golf day in memory of a brave young boy, Matthew Chapman, who sadly lost his life at just eight years old from a rare incurable condition.
Matthew Chapman was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) in October 2018, just before his fifth birthday and passed away on February 21 last year. INAD is a rare lipid storage disorder which affects a child’s nerve signals, leading to a gradual loss of muscle control, vision, speech and development.
The golf day is being held at Bridgnorth Golf Club on June 2 and will be hosted by Telford-based Komplex Care, a leading national provider of nurse-led care for adult and child clients in their own homes and the company which provided the care for Matthew over the final months of his young life.
Playing in the Texas Scramble format, the Komplex Care Golf Day will also host some competitive competition as there will be a prize of a new BMW for anyone who gets a hole in one.
All funds raised will go to Cure INAD UK, a charity set up by Leeds parents Christine Hamshere and Steven Lightfoot to raise funds to help fund research into finding a cure after their daughter Zoe developed the condition.
Matthew’s mum Tory Chapman, who lives in Lincoln, said the family will be at the golf day to tell their and Matthew’s story while trying to raise awareness about the extremely rare INAD condition, and the Cure INAD UK charity.
She said: “If we can help eradicate this horrendous disease, we will do everything in our power to do so because it is like watching a rubber erasing your child very, very slowly. We want Matthew’s legacy to live on and we want to raise awareness, not only of Matthew’s condition but also about how other children and their families are being affected.
“We will be at the golf day and hope that hearing about our and in particular Matthew’s journey will open people’s eyes to this terrible condition, because not a lot is known about it.
“Steve Papp from Komplex Care approached me after Matthew passed away and said he wanted to do something in honour of Matthew and the golf day tribute is just fantastic.
“We had Komplex Care for around the final six months of Matthew’s journey having had to change care providers and they were like a breath of fresh air. We met Steve and Wendy, the paediatric nurse, who worked with us to formulate a personalised care plan for Matthew as his condition was so rare.
“Komplex Care provided great support. They were able to offer us a lovely girl called Lilly who proved to be pretty much Matthew’s main carer and she stayed right up to the end, bless her. She became part of the family.
“Matthew wasn’t able to talk so a lot of the care involved gauging his reactions from body and eye movements, gauging his vocal signs, managing all sorts of medication and making sure he was as comfortable as possible. We liked the fact that Komplex Care found a carer for the package rather than just seeing it as an individual package which was also part of lots of other packages.
“Our previous care provider had carers working on eight, nine, 10, 11 care packages, so for Komplex Care to come in and say we are going to find a person for you and solely for you was a real game-changer. It meant we could have that faith and sustainability we were so craving.
“Lilly chose to stay with us until the end, she didn’t have to, which was a credit to the way the Komplex Care package ran and the way they managed their care. They learnt a lot through caring for Matthew and Steve told us that this was the way they wanted to deliver their care packages moving forwards.”
Christine Hamshire, of Cure INAD UK, said: “I would like to thank Tory for suggesting us as the charity of her choice for the golf day and Komplex Care for hosting the event – it really is appreciated. We launched the charity in 2021 as a way of helping to fund research to find a cure for this vile condition as quickly as possible.
“We have had some incredible people come forward with some amazing fundraising events which help us to offer grant funding for research. It is ongoing research and gene therapy will prove to be a massive game-changer. Because we are a very small charity, we are able to ensure that every penny we raise will go to fund research.”