At the age of 3, when we went to fetch her from visiting grandparents after school holidays we noticed the spots on both of her eyes. Her dad thought I was overacting because she has Eczema he thought it was another breakout of eczema but it kept growing and became lighter and lighter. We decided to take her to the dermatologist but I knew that it could be that pigmentation problem (didn’t know the name). I just saw the look on the Doctor’s face and knew that my worst fear was confirmed. The Doctor was very sympathetic and suggested treatment but he told us there is no guarantee and her vitiligo could relapse. We opted for treatment, some cortisone salf and UVB Light therapy, we had to do these 3 times a week,
She had to stand still for 3 min front, 3 min back and she had to make sure she closed her eyes as the light could damage her eyes and she could not wear the protective glasses because vitiligo affected her eyes. She was only 3 years old but she followed instructions, it was heartbreaking to watch her but we got used to it and it became fun time for her, she would sing and do her preschool rhymes while under the light. Most people at the dermatologist knew her and they told her they couldn’t wait for her to come and sing again 🙂
She was on that treatment for a year which after 3 months or so there would be repigmentation (but she would be darker than her normal skin) but then she would relapse again while on treatment. Her dad and I decided to stop treatment (it’s over a year now) & I can see some new spots on her legs. We decided to stop treatment because the relapsing meant that she will have to be on treatment for a long time and we were worried about the long-term side effects of the cortisone and UVB light therapy.
She has 2 older brothers who adores her. When vitiligo started, big brothers were disturbed because someone at school said their sister has skin cancer, we had to assure them that it’s not cancer and she is not in pain at all, we collected some articles for them for further explanation they also did their own research on the Internet and found a nice poem about vitiligo, which they posted on her bedroom. They are always willing to explain/educate when questions arise about their sister. She is very bubbly and is princess of the house. Some people stare because of curiosity and they advice on how to treat it. Small kids would ask if she was burnt. she calls vitiligo “spots” she knows that God loves her and made her unique and she is beautiful with or without the spots. When she sees someone with spots she will be like “mommy/daddy look, she/he has spots like me” with a wide beautiful smile that melts my heart and her daddy’s. She knows that she is beautiful and we love her. She’s starting school next year and we’re scared of bullying. We don’t have control of what will happen to her out there but she is strong and confident. We can only support and make sure that we build her to have more confidence and most important to love and accept herself. She will grow up knowing that people will talk and stare but it’s only because they are curious and don’t have information about vitiligo and that she shouldn’t get angry but take that opportunity to educate whoever is willing. We know it’s going to be a hard, bumpy and emotional road but she is our princess and we are ready to walk the path with her. Most importantly she has brothers and sisters at Beyond Vitiligo to look up to.