Mike Taylor and Alison Scattergood on their very personal fight against a rare disease
When I met up with Alison Scattergood at Salon International in October, I was very moved by her story of losing an eye to retinoblastoma – a rare childhood cancer – before going on to become a pioneering icon in barbering. I was shocked that this extremely rare disease – there are only 50 cases a year reported in the UK – had coincidentally affected a great friend of hers and fellow barbering legend Mike Taylor, founder of the British Barbers’ Association. Mike’s 2-year old daughter was diagnosed with retinoblastoma earlier this year, and is undergoing treatment.
I immediately took advantage of the opportunity to put both Mike and Alison in the Takara Belmont interview chairs to talk about this sad coincidence, and they told me of a tiny, dedicated charity working to raise awareness of the disease, and of a massive awareness event Alison and Mike are planning for next May’s Barber UK in Birmingham. I was on board right away!
A MAJOR PLEA to Industry Influencers
But first, A MAJOR PLEA to all the INDUSTRY INFLUENCERS: BARBERS and HAIRDRESSERS are needed to sign up as soon as possible for the Alison and Mike’s Barber UK event at Birmingham! They need to plan and print promotional materials about who’s coming and they NEED YOUR SUPPORT! Barber UK has offered them two massive stages, one for barbers and one for hairdressers, so they need artists and stars to help out by appearing. Won’t you do your part, too? These two industry stalwarts need your support, so contact them and volunteer today!
Ok, on to the details of the story!
“I was diagnosed at 6 weeks and my left eye was removed surgically when I was ten weeks old,” Alison told me. For years she kept the condition private, but as she got to know the people at the Childhood Eye Cancer Trust charity, or CHECT, in London, she decided to be more forthcoming about it.
“I realized the mission is awareness and I could help,” she said. “My story went massive on Facebook and I got so much response from families, even in America, who had children suffering from the same thing.”
“But I had never known anyone affected by it personally until Mike.”
“My daughter, she is only two, and obviously your world falls apart when you hear the news,” Mike said of daughter Alice’s diagnosis earlier this year. “You never figure it will happen that your child has cancer. Then I found out Alison was an ambassador for CHECT, and she has been so much help to my wife and me.”
“The chances are millions and millions to one that you would get two people who know each other that well, both affected by this incredibly rare disease,” Mike said.
“I was really shocked because we live just miles apart,” Alison recalls. “I was gobsmacked, really. But soon we started talking about getting Mike involved and helping CHECT.”
CHECT: a small charity with an important message
Alison calls CHECT a “tiny” charity that is chronically underfunded, though it has been working hard to raise awareness in the UK for 30 years. “The disease is just so rare,” she says. “CHECT can sometimes be overshadowed by bigger causes.”
“And being a guy, you want to do what you can to fix the (cancer) situation, but you can’t fix it,” Mike chimed in. “But one thing I have the power to do is to help CHECT, because it is a very small charity.”
Next May’s event in Birmingham will help raise awareness, which is crucial even among doctors. The disease easily slips by medical professionals who often have no experience with rare childhood eye cancers.
“Alice was checked quite a few times by doctors and even a specialist and they never even saw it,” Mike told me. “The eye specialist who found it told me it was the second one he had ever seen in his whole career. Most doctors will never see one in their entire career.”
In fact, Mike said he and his wife as well as nursery workers noticed little Alice squinting regularly, but doctors were not initially concerned.
He recalls: “We knew it was a massive problem when my wife said, ‘Alice can’t see out of one eye, I am sure of it.’ So we played pirate with her and when we put the patch over the good eye, she started walking into walls. She was blind. And that was when we knew, ‘This is not a squint. Our daughter is blind in one eye.’”
Helping Mike and Alison make the 2018 Barber UK stage shows a SUCCESS!
The pair have arranged for two massive stages at Birmingham NEC during Barber UK on May 20 and 21, 2018, one for barbering and one for hair. The goal is to get as many big-name hairdressers and barbers to come and do shows, attracting good-sized crowds who want to see their work. “Everyone is welcome,” Mike says. “We want to get as many brands on board to shout from the rooftops about CHECT and this type of cancer.”
The pair plan on-site raffles with brand support, “smaller ones leading up to a big-brand main prize,” Mike says.
“It’s such a fantastic venue, huge place, it’s such an opportunity we’ve been given and we need the help of our friends in the business to make it a big success,” Alison said.
They are working out fresh ideas to market the event and promote awareness. One such is asking barbers and hairdressers to wear an eye patch on the job to spark conversation during CHECT week, which coincides with Barber UK 2018. “We’re open,” Mike says. “Perhaps you can get something started in your town or shop, or contribute a ideas.”
Retinoblastoma signs and symptoms
So what should parents and doctors be looking for?
“A squint is one of the symptoms,” Alison said. “If you look at a picture with a flash, sometime the pupils will look white. That it is not always retinoblastoma, but that is one of the symptoms.”
“Also in certain light the pupil can look translucent, like a cat’s eye,” she said.
Retinoblastoma symptoms can also include the following, though these symptoms can easily be caused by conditions other than cancer:
- A different color in each iris (the colored part of the eye)
- Eyes do not appear to be looking in the same direction
- Redness or swelling of the eye
“It needs to be caught early,” Alison added, emphasizing the need for awareness. “It has a massive survival rate but if you don’t catch it in time, it can obviously lead to being fatal.”
As for little Alice, Mike says after her diagnosis in March she began chemotherapy, which is finishing up now. “She has a 50-50 chance of keeping her eye, though she has already lost sight in it,” he said.
“What Alison has done with her career is such a good example for Alice and others,” Mike said. “I can tell my daughter this is not the end of the line. She will go on to fulfill her dreams.”
You can help fulfill the dream of a hugely successful Barber UK CHECT event by getting on board early and contacting Alison or Mike today. Mike is easy to find through miketayloreducation.com and Alison recommends contacting her through East Durham College, where she is a well-known lecturer.
It’s a wonderful opportunity for all of us in the industry to rally round two of our well-known people and support their fantastic cause: raising awareness of childhood eye cancers and promoting early detection.
Let’s make it happen and ‘til next time, happy barbering!