An account manager with an incurable genetic condition causing tumours to grow on nerves and skin fears most people have never heard of the malady which also affects two of his three children, despite there being 25,000 cases in the UK.
Mike Bird, 37, was found to have neurofibromatosis type 1 (NF1) as a baby, after a seizure alerted doctors to a gene mutation that resulted in his diagnosis.
Determined to raise awareness of the condition, Mike – who lives in Bridgwater, Somerset, with his wife, Katrina, 35, a stay-at-home mother, and their children, Nathan, 15, Freya, 11, and Charlie, seven – says early diagnosis can be made if symptoms like ‘café au lait patches’ – flat, pigmented birthmarks – are spotted on a child’s skin.
Mike, whose youngest two children have NF1, said: “I was just a few days old when I had a seizure and doctors suspected I had a gene mutation, which led to my diagnosis of NF1.
“I grew up knowing it was hereditary and that there was always a 50 per cent chance of passing the condition on to my children.
“But when I had kids of my own, I just had to hope that wouldn’t happen.”
Mike added: “The condition is actually more common than other rare conditions like Huntington’s disease and muscular dystrophy combined, but there is very little said or known about NF.
“My goal is to raise awareness, so that people who are going undiagnosed can get the right treatment.”
Sadly, Mike’s two youngest children were both diagnosed with NF1 at birth which, according to the NHS, is a genetic condition that causes tumours to grow along your nerves. It should not be confused with NF2, which is rarer and has different symptoms and causes.
While people are born with NF, some symptoms develop gradually over many years and its severity can vary considerably from person to person.
Mike said: “It really depends on the individual. You could have a facial deformity, or be in and out of hospital for surgery to remove tumours, or you could be someone who doesn’t even know they have the condition because the symptoms are so slight.
“Growing up, I had very mild symptoms, but about four or five years ago doctors found a benign tumour growing on my brain.”
He added: “It’s currently nothing major to worry about, but they are keeping an eye on it and I have yearly MRI scans so that they can track any changes or growth.”
For Mike’s children, things have been very different.
He said: “Several lesions have recently been discovered on Charlie’s brain which they are keeping an eye on and Freya had a tumour growing on her neck.”
Mike added: “She was having scans every six months to check it, but doctors noted that it was growing and also starting to cause signs of early paralysis.
“Three years ago she had an eight-hour operation to remove the tumour and now we are in and out of hospital all the time and worry about the tumours potentially developing further.”
Luckily, Mike’s children are robust and, despite the intrusion NF1 makes into their lives, they are not fazed by it.
He said: “When they’ve had to go for scans or Freya for her operation, they have both been superb little troupers.
“It almost makes me cross to see adults kicking up a fuss over things like having a cannula put in, because my seven-year-old has no trouble with it when he has one of his brain scans.
“And Freya was incredibly brave when she had surgery on her neck.”
As May is NF Awareness Month and World NF Day falls on May 17, Mike hopes to give people more understanding of the condition with the help of his employer, nursery essentials and toy company, Hippychick,
He said: “The company I work for, Hippychick, have very kindly offered to help raise awareness.
“They have a donations facility set up on their website and they have partnered with the charity Childhood Tumour Trust, who have been a massive support to my family over the years.”
The condition is actually more common than other rare conditions like Huntington’s disease and muscular dystrophy combined, but there is very little said or known about NF.
According to the Childhood Tumour Trust, NF1 affects more than 25,000 individuals in the UK, but little is known about it.
Mike said: “If you have a child who has at least six café au lait patches, there’s a very high chance that they have NF1. I don’t think a lot of people know that.
“I’m very keen to not only raise awareness but to raise money too for the Childhood Tumour Trust, in order to give back to a charity that has supported my family.”
He added: “In 2020, I ran the equivalent distance from Land’s End to John O’Groats which was 874 miles.
“I completed it over the course of 11 months and raised over £1,000 for the charity.
“I’m very grateful for the work they do to support families like ours and I’ll continue to contribute in any way I can.”
Julia Minchin, Founder and Managing Director at Hippychick, says the company is a keen supporter of charitable causes.
She said: “In its 22-year history, Hippychick has raised many thousands of pounds for charities, particularly those where children are involved.
“Every year, we ask our employees to suggest charities to support. Mike came forward with the Childhood Tumour Trust who have provided fantastic support to him and his family. Mike is a highly valued and loyal employee and it has been heart-breaking for us to witness the effects of NF on his family over the years.
“It makes perfect sense for us to support CTT this year.”
To find out more about Neurofibromatosis go to ‘Noticing Neurofibromatosis’ campaign and to donate to the Childhood Tumour Trust go to www.hippychick.com
