Tory Chapman talks about her son Matthew’s journey and the care he received from Komplex Care


Matthew Chapman lived with his family in Lincoln and we provided care for him over the final months of his young life. Matthew passed away as a result of a rare incurable condition on February 21st, 2022 aged just eight years old.

He had been diagnosed with Infantile Neuroaxonal Dystrophy (INAD) in October 2018, just before his fifth birthday – a rare lipid storage disorder which affects a child’s nerve signals, leading to a gradual loss of muscle control, vision, speech and development.

Matthew’s mum Tory is keen to share his and their story in a bid to raise awareness about the extremely rare INAD condition and the Cure INAD UK charity which was set up by Leeds parents Christine Hamshere and Steven Lightfoot to raise funds to help finance research into finding a cure after their daughter Zoe developed the condition.

Close relationship

We are also grateful to Tory for taking the time to talk about the close relationship we at Komplex Care built up with the family and the care we provided for Matthew.

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 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.

“We had Komplex Care for about 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 with the company’s Steve Papp and Wendy, the paediatric nurse, who worked with us to formulate a personalised care plan for Matthew as his condition was so rare.

Part of the family

“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.”