The MiaThrives Team was thrilled to receive so many amazing nominations during the Angela’s Angels campaign 2020. There are so many incredible caregivers and members in the EB community. We were touched by so many stories that the task of choosing a winner became very difficult. Due to the generosity of one of our sponsors, we awarded all three finalists the $1000 prize and title of Angela’s Angel Award winner 2020. To learn more about the Angela’s Angel award click here.

One of the amazing women who won the award this year truly advocates for the EB community embodying so many traits the award represents; her daughter Toni sent in her beautiful nomination for her mother Angela, that you can read below.

I was born, with Junctional EB in 1993 in South Africa. My parents already had a happy and bouncy 4-year-old girl and had also taken in and fostered a little 4-year-old African boy. As always, EB came as a big shock to my parents (as is for most other families too), but they quickly set into operation mode to make things work. My father took on as many jobs as he could to financially provide for our family and my mother dropped absolutely everything to care for me full time. She left her career and stayed home with me 24/7 to make sure I was as comfortable as possible. Medical professionals told my parents I would not live to see my first birthday and that they should cherish every moment they have with me. 

There was no internet back then, so my mother set off to find other EB families via the radio, television segments, and by simple handwritten letters. We had very little information in South Africa and zero medical or financial assistance from the government. Every now and again she would make contact with a fellow family, they would exchange ideas and she would support them in any way possible. As a young tot, I remember my mom meeting with quite a few families overall. This eventually led her to lead a group of EB families in a support group at the local children’s hospital. I remember there was one child with EB who lived in a children’s home. Every couple of weekends, my mother would fetch her to spend the day with us. 

Before I was born, my mother worked in television. While she stayed at home to care for me and my siblings (mostly alone, as my father was all over the country, working very hard), she studied teaching part-time in the evenings, once we were all fast asleep. This was because she wanted to become a teacher so that she could be close to me when my school-attending years started. In these years she also started Friends of Debra, which was what you were called then if you started a Debra outside of the UK. My parents appeared on about 7 television programs to try to reach out to families in South Africa and to let any EB families know about the support they were offering. 

In my first year of school, my mother and the support team at the school planned a very sweet little EB info presentation. Where my mom and I spoke to the class and had a little ‘popping party’ where we showed my EB and how we managed it. The aim was to show the little Grade 1s exactly what I was dealing with and to educate them and their parents. It turned out extremely successful and this was the course we followed whenever I entered a new environment. 

As the years have gone by my mom has continued to stay involved and active within the EB community in South Africa and abroad. What is quite common in EB is for families to be active and involved when their little ones are small, and when their EB is under control they tend to not be too involved with the EB community. This is not the case with my mom. Even though we’ve had a great hand at my EB since I was much younger, she has continued to pour her efforts into new EB families, without ceasing. You can often find her at the local hospital with a flask of coffee and a homemade meal for mothers who are supporting their newborn babies. I am 27 years old this year and my mother and I are nowhere near stopping being involved in the EB community. We have a wonderful DEBRA South Africa group and have continued to travel overseas to keep up to date with the latest information and discoveries. 

My mom is involved in two clinical practice guideline groups with DEBRA International (namely Transitions and Physiotherapy). We have attended the Canadian Global Skin Conference for the past 2 conferences in France and Italy and have recently attended the EB 2020 Congress this year in London (where my mom was involved in meeting after meeting with her involvement with Debra). She also participated in the Rare Derm Forum with Global Skin last year. As well as the Dermatology Congresses of South Africa over the years, educating more of our dermatologists about EB and letting them know that our support group exists. 

Due to COVID, I have lost significant funding to reconstruct my mouth and teeth with experienced EB dental professionals in Valencia Spain, as my Junctional EB affects my mouth drastically. Next month my mother will be flying to the UK to work as a carer to earn extra money to pay for the gaps in my reconstructive work that we cannot afford. 

She is the epitome of selflessness and humility, always thinking of others and willing to give the shirt off of her back to assist the next person. In South Africa, we have a large divide between the have and have-nots and my mother has always been dedicated to helping others, whether it be starting soup kitchens all over or reading to and giving educational resources to little children who’ve rung our doorbells. She is the type of behind-the-scenes giver, who has left a busy birthday celebration to take all her leftover birthday eats and birthday cake to sit with her soup kitchen women and children and share her birthday with them. 

It would be the loveliest gesture if she won this award. It would give her the biggest boost for her venture to the UK to try to earn a bit of extra money towards my EB medical costs. I have attached a few photos to show the light and the angel inside of my Angela 🙂 

Thank you for reading this, I hope you have the best time reading about all the EB caregiver warriors! 

What a good dose of positive reading for you after such a turbulent year. 

Warmest Regards, 

Toni 

A video message from Angela!