The family of a doting dad-of-three who died days after being found lying unconscious in his garden, have shared what life is like living in the shadow of a genetic disorder.
Kieran Taylor was born with Neurofibromatosis 1 (NF1) - a genetic condition that causes tumours to grow along the nerves in the body. During a routine check-up last month, doctors discovered Kieran had an NF1 tumour pressing on his abdominal gland. Two days later, on July 11, the dad-of-three felt unwell and was rushed to hospital.
After leaving hospital, the 32-year-old was found unresponsive in his garden after becoming confused. The Preston-born dad living in Walton died after his family made the heartbreaking decision to switch off his life support machine.
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Now Kieran's wife, Donna, 35, has spoken about NF1 - a condition which also affects their two children, Willow and Blake. Kieran was also dad to Bobby, seven.
Like his dad, Blake, five, was diagnosed when he was just five months old after 'café au lait spots' appeared on his body. Café au lait spots are coffee-coloured marks which are usually the first symptom of NF1. They are painless and usually develop before a child turns three. NF1 varies from person to person but while the tumours are typically non-cancerous, they can be fatal. NF1, which is caused by a faulty gene, can cause tumours, problems with bones, eyes and nervous systems.
Blake needs help with movement as he cannot dress himself, he has a curve in his spine and is showing signs of autism but has not yet had a formal diagnosis. Blake, who was born at 30 weeks, struggles with change and has a 'meltdown' if his routine changes. He struggles with physical tasks such as riding a bike but excels mentally.
Donna, who is full-time carer for her son, said: "He has to have things a certain way, if things do change last minute he just has a meltdown. He is brainy, his math skills are like a nine-year-old. He could tell you the 12 times tables."
The couple's daughter Willow, four, was born at 30 weeks and four days. When she was eight months old, café au lait spots began to appear on her body - this was Willow's first symptom. When she was nearly two her left eye dropped and she was diagnosed with a benign optic tumour.
She has to wear glasses and soon will have to wear a patch on her right eye. If this does not help she will have to undergo further treatment. NF1 has had a huge impact on Willow's life leaving her with a tumour, behaviour issues and low muscle tone in her legs.
Willow also needs help with speech and language and has yearly MRI scans and NF1 consultations.
Donna said: "She falls over fresh air. You can see when she is tired because her legs change when she walks. Both of them can't yet ride a bike. They can ride backwards but they can't yet understand they need to put their foot down to go forward."
The couple struggled to explain Kieran's illness to their children, who saw their dad collapsed in the garden. Donna said: “The kids saw him lying there but they thought he was sunbathing because that is what he always did. I had to stand to the side of Kieran and tell them to go straight in.
"I told [Willow] 'the lump in daddy's stomach was why he was so poorly,' she just looked at me so I don't know if she understands. Every morning and night she says to me 'I miss my daddy'."
Charity Director for Nerve Tumours UK Karen Cockburn said: "There are 26,500 children and adults living in the UK, who are diagnosed with the condition, yet many medical professionals have either not heard of Neurofibromatosis, or never come across anyone with the condition on their caseload. This makes it all the harder for those with Neurofibromatosis to be fully understood by the medical profession, to have their condition taken seriously, or to get access to essential care.
"Approximately 25,000 of the community are diagnosed with Neurofibromatosis Type 1 (NF1). It can cause tumours on the optic nerves, which severely restrict sight or cause blindness; curvature of the spine; large benign tumours which can result in mobility and speech problems; malformation of the long bones below the elbow and knee, that affect children’s leg development and often results in operations or amputations; and over 60% of NF1 patients have learning difficulties. People live in constant pain, are vulnerable and often isolated."
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