We caught up with one of our latest fundraisers, 11-year-old Jesse, who is raising awareness and funds for Alopecia UK by selling badges with the slogan 'No Hair Don't Care'..

How did the idea for the badges come about and how has it helped to see others in your community wearing them?

We do an charity event as a family every year, we have had MacMillan tea parties, sold cakes for an animal shelter and since I have alopecia, I wanted to find a charity that supports that this year. My mum saw on Facebook that there was a charity called Alopecia UK and she joined their private Facebook group. It mentioned an Alton Towers trip and they were giving away free tickets to kids with alopecia. So I wanted to make it fair and raise £40 to cover my free ticket. I wanted to do cakes at first, but if we made badges, they would last longer and people could wear them to raise awareness of alopecia too.

I designed the badges with a little picture of me and gold words saying 'No Hair Don’t Care'. My sister helped me get my head shape right. We have sold them at my basketball club, in my school, at my mum's school and to all my friends and neighbours. It’s felt amazing to see people wearing them and people are keen to ask me about alopecia now. People know I have it, it isn’t scary and I don’t mind talking about it. I wanted to say ‘No Hair, Don’t Stare’ but we thought that might be rude so we went with 'No Hair Don’t Care, as I don’t have hair and you shouldn’t care!

You recently joined us at our Alton Towers event. What was your favourite bit about the event? And if you were to describe the event in just 3 words, what would they be?

My favourite bit was meeting other people with alopecia and spending the day with them. I hadn’t met anyone with alopecia in real life before that trip. My three words are: Fun, Exciting and Friendly.

Over to Mum, Kate..

What do you think has been the most helpful thing for you as a family in your journey with Jesse’s alopecia?

Initially l finding a small patch on Jesse’s head was scary, but we just thought it would grow back. As it started to progress and we realised this was something we had to learn about and help Jesse to deal with, I started to look for support. I started by lurking on the Alopecia UK private Facebook group, absorbing peoples stories and trying any solution that was mentioned. But as it started to move towards AT/AU we all knew we had to accept it and learn to live with it. Jesse deciding to brave the shave was the turning point as he took control and felt a lot happier when it was all gone. He become more confident and his resilience grew (when his hair was patchy, he was very sensitive and was often upset by little things, looking back I think his hair was more likely to have been the reason for feeling more emotional but we didn’t see it at that point).

What advice would you give to any parent who is perhaps struggling to know how to best support their child with alopecia?

Alopecia can feel a bit like the rollercoasters at Alton Towers with ups and downs. I do think that the community around the child will help shape how they deal with it. We have been open with all the teachers, parents and children at Jesse’s school and invited conversations about alopecia. It has helped to normalise it and people just see Jesse now, not his alopecia. Get involved with Alopecia UK, that has helped us as a family to meet with others and feel like you’re not alone. You also have to be guided by your child, they will know the best time for them to shave of their hair, if they need too.

Lastly, as upsetting as it can make you feel, as a family, we’ve have tried to be very open and honest and a little ‘matter of fact’ with Jesse and dealt with it with humour. Although there were days where we felt lost and scared for him, we never let him know that and we listened to him and validated his feelings if he felt low and celebrated the times where he was confident and we have been so proud of him.

How do you feel about how Jesse has navigated having alopecia so far?

Jesse is an absolute breath of fresh air! He has been incredible. It hasn’t all been plain sailing for him and there have been days when his hair was patchy where he would be upset in the shower when he saw his hair, or when he woke up in the morning and his pillow was covered, but generally he has tried to be really positive. Since losing all of his hair, he has thrived as an ambassador for Alopecia and is actually proud to say ‘ I have no hair and I don’t care’. He has had children being unkind, he was once called cancer kid and he’s had children laughing at him, but he has always be dignified and isn’t afraid to tell them that he has a condition called Alopecia and that’s why he has no hair. We were so proud that he decided to do a fundraiser and are amazed at the generosity of everyone around him. It is testimony to how popular and well liked he is! He is an incredible young man. We can’t wait to see what he does next!

Jesse has raised a whopping £1,275 at time of publication! If Jesse's efforts have inspired you and you would like to support his fundraising efforts, you can leave a donation on his page here.