Testimonial: A Young Child With Alopecia Finds Joy
I still remember the day my daughter, Mia, was officially diagnosed with Alopecia. She was one year old and had been developing small patches of hair loss for a few months. Two GPs dismissed it as normal baby hair loss, but I knew something wasn’t right, so I sought a 3rd opinion and demanded a referral to a specialist.
We waited over 90 minutes that day in the dermatologist’s waiting room, for a 10-minute appointment where I was told “your daughter has alopecia areata. Here’s a script for some lotion & a brochure explaining it all” and we were sent out the door. Reading the brochure in the carpark, the points that stuck in my head were things such as: “can progress to total hair loss”, “progressing to whole body hair loss”, and “higher rates of depression and suicide”. No mother wants to read these things as a possibility for their child. We were meeting my husband down the beach for a family weekend away, and I cried driving the whole way there. I have cried many many tears over the past four years, with the fear of how my child would be able to live a normal happy life with such an obvious condition.
During this time, Mia’s hair would fall out, then re-grow, then fall out again. Different medications would produce different results – what worked one time wouldn’t work the next, and the side effects of a 3-year-old on oral steroids were horrible. She was angry, emotional, gained weight, and had difficulty sleeping. Her hair grew back, but once the steroids stopped, it fell out again. I was searching online for hours on end for different treatment options, wondering how we could “fix” this; surely there had to be some miracle cure I hadn’t yet heard of. I found it hard to explain to friends or family. No one really understood what I was going through. Then I joined an online local support group, ran by the Australian Alopecia Areata Foundation (AAAF). The advice provided, messages from other mothers and adults who had grown up with alopecia and the new friendships we made were invaluable. These shared stories gave us the confidence to make the decision to cease medical intervention and focus on building our child’s self-esteem; to focus on the importance of self-acceptance; teaching both our daughters that what matters most is the person that we are, how we treat others, and that our world is made up of people who all look different because being the same would just be boring!
Mia is now 5 years old and she spent the first few years of her life oblivious to her condition. But once kinder started, the questions slowly came. We started by explaining that she had “little hair”. Still, she seemed unfazed and remained her happy, cheeky self. Half-way through 4-year-old kinder she became very aware that she was different; when we were ou,t strangers would stare, and kids would point and say things. Mia said to me one day, “I just want to have hair like everyone else.” We discussed the idea of a wig, so I started looking at different options that would be suitable for a young child. Something fun but not too serious, something that would be easy for her to use, comfortable and secure, without falling off.
By chance, I found Real Fringe Hair Bands on Facebook and a post looking for hair donations. My 6-year-old daughter decided she would cut her hair to donate. It was sent to Nicole with a message about our story. Since then we have been lucky enough to have a Real Fringe Hair Band made for our daughter with hair donated by her older sister! This is going to be such a great option for Mia to have, whenever she just wants to blend in with the rest of the crowd, she can easily slip on the hair band with a cap or scarf and be treated like everyone else! No one will point, stare or say horrible things to upset her. She can just be a carefree young girl having fun like everyone else! And nothing means more to me than the happiness of my children. So thank you, Nicole, for creating such an amazing idea and product!
And to everyone who donates – you are amazing. The joy these hair bands are going to bring to someone with alopecia or going through cancer treatment is huge. This is going to change the lives of many many people for the better!
~ Shared by Jackie P (Mia’s & Tayla’s mum)