Youmna Ghaziri is a full-time Mum and activist. When her oldest daughter was eight she developed a rare genetic condition, Erythromelalgia. Also known as Man on Fire disease, the condition is characterised by intense burning pain of the extremities, severe redness and increased skin temperature that may be episodic or almost continuous. Its occurrence, which is one in 100,000 in the US, remains unknown in the UAE and wider region.
Youmna decided to home school her daughter when it became apparent she could no longer cope with mainstream school. She also became an activist intent on bringing wider attention to Erythromelalgia or EM. We talked to Youmna about how she copes with homeschooling and why she decided to store her second child’s stem cells.
How did you first hear about banking stem cells?
I heard about banking stem cells after my first child was born (12 years ago now) when I read about it in an article but I only considered it seriously during my second pregnancy three years ago, and I was so happy to be able to store them with Cryo-Save!
Why did you bank your child’s stem cells?
The age gap between my daughters is ten years! My eldest was diagnosed with a rare disease, Erythromelalgia, at eight year’s old. It’s a painful condition that still needs a lot of research to find a cure and effective treatment. Receiving such sudden and shocking news made me look into many medical possibilities and stem cell research and clinical trials are very promising for all sorts of medical conditions, meaning they could help both girls no matter what the future holds for them.
How has your life changed since having your children?
My children are my whole life. My eldest Lynn has taught me resilience and inspires me daily with how gracefully she faces her painful condition, she’s my best friend. She helped me venture into homeschooling, as going to school became more challenging after her diagnosis. The youngest, Lara is our miracle after 10 years and she really brought a different kind of sunshine to our lives, especially to her sister’s. I love being their mother and dedicating my time to them is an absolute honour, even if it seems draining at times to run around after a toddler and deal with a pre-teen at the same time!
Tell us about your children. How old are they, what has your favourite moment of their development been so far?
Lynn is turning 12 in October and Lara just turned two in July. Despite the big age gap between them, their bond is super special. They are inseparable, the little one motivates her big sister and distracts her from the pain by being funny, cute and playful, and the eldest is caring and loving and is so involved in her sister’s upbringing. She even taught her Baby Sign Language when she was seven months old, and enjoys playing, reading and singing with her.
How do you balance your activism with being a Mum?
As I mentioned before, after Lynn’s diagnosis four years ago, my life changed. I gave up everything and focused on researching and reaching out to doctors worldwide, attending seminars on rare diseases and orphan studies.
I started a blog that was published on The Mighty health site and I’ve been managing a wide social media awareness campaign for the past two years. I also launched the RED HAND CHALLENGE, which has been a great success in educating people and medical professionals about Erythromelalgia. All of that, on top of home schooling , leaves me little time to do anything else.
Is being a working Mum important?
I graduated as an Agriculture Engineer and five years ago, when I first moved to Dubai, I was venturing into starting my own business, but life can have other plans. I take great pride in being a stay at home mom with an important cause in raising awareness about my daughter’s rare disease and the challenges faced by special needs kids in general.
What advice can you give to first-time mums?
Motherhood is a blessing with all its sweet and challenging moments. Always keep faith in yourself and your motherly instinct. Know that you are your child’s number one advocate and voice, and together you can face the whole world, even its rarest challenges.
Have friends or family been encouraged to store cells because you did?
Absolutely! I’m very happy with my decision to store my baby’s stem cells and I’m very vocal about it. Many of my friends have asked me about it and I always encourage them to do it. My cousin is due in October and I was keen on advising her to store her baby’s stem cells and discuss all the great benefits of it. This is the first most important investment in your baby’s future health!