Meet super mom Youmna who lives each day for her kids and is raising a beautiful young lady with a rare, incurable disease. This mom and her daughter Lynn try to raise awareness while desperately searching for a cure. Read her story here to know why she goes by the name “The Firefighter Mom”.
My name is Youmna, mother of two daughters and a Lebanese expat living in Dubai for the past 4 and a half years. I graduated with a degree in Agriculture Engineering, but always found myself working within the humanitarian sector, with NGOs and such. I have a certificate in International Humanitarian Law from the International Committee of Red Cross Geneva, worked closely with people with special needs and refugees in Lebanon mainly. Currently I’m a stay at home mom, homeschooling my eldest Lynn (11.5 years) and Lara (20 months), while managing The RedHandChallenge awareness campaign through Facebook and my Instagram page Thefirefightermom .
Lynn lived a very normal life up until her 8th birthday, after which she woke up one day screaming from burning pain in her feet and hands. After several weeks of nonstop flares and baffled doctors, I took Lynn to Canada and the US seeking medical advice. Six months later, after being on several waiting lists at different hospitals, Lynn was diagnosed by a pediatric neurologist at Massachusetts General Hospital in Boston. Her diagnosis came in as a shock when we heard the words rare and incurable together – words a mother never ever wishes to hear.
Lynn was diagnosed with something called idiopathic Erythromelalgia which causes her to feel a burning pain mainly at her hands, feet and face, which manifests itself as red hot skin due to excessive vasodilation . The daily unavoidable flares cause extensive damage to Lynn’s skin, causing it to break and bleed, and impairs her physically by limiting her movement and social life.
Lynn has become known on social media as “The Girl on Fire” as we search for a cure and try to create as much awareness about this rare condition in order to help others who might be in the same situation but dont know what it is or how to get it diagnosed.
EM has an occurrence of 1 in 100,000 people in the US, however, so far we have not found any other adult or kid in the Middle East or Arab Community who has been officially diagnosed with EM, making Lynn the only known case and super rare. Our tough journey to find a diagnosis is what inspired me to start an awareness campaign, for who knows maybe others have the same condition but haven’t found a doctor who knows about it. Our region definitely needs awareness about EM and other rare diseases in general.
The RedHandChallenge was started on social media platforms where we asked people to paint their rand red and post a photo online tagging #theredhandchallenge #thegirlonfire as we hoped that through the challenge we could raise enough awareness to encourage researchers to find a cure for this debilitating condition.
When asked if she had any advice or anything she would like to say to moms who have been through or who are facing similar situations, Youmna had this to say:
Being the parent of a child with chronic pain or special needs, is definitely not an easy nor a pleasant role. Needless to say it’s devastating to feel helpless and unable to relieve your child’s suffering, however, it is never an option to act defeated. You are your child’s source of strength, hope and their voice of advocacy. Be proud of your kids no matter what their abilities or disabilities are and keep moving forward . Embrace the pain and turn it into gain by raising awareness and if you can’t get in touch with a support group, then create your own.
You Can Follow Their Journey At: