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.
Let me introduce you to a supermom and her little miracle micro prem daughter whose story gives me a reason to live for each day. Karin Anker has agreed to share Charlotte’s story with you as she tries to create awareness on preeclampsia, eclampsia and HELLP syndrome.
I am Karin. The daughter of two amazing parents taken far too early in life. A sister to an incredible brother, wife to a man whose strength and determination has seen us survive heartbreak and elation time and again. My greatest role to date, however, is being the mother of a sensationally stubborn and incredible young girl named Charlotte.
We had never envisioned ourselves as being parents. Two years prior to Charlotte we had fallen pregnant unexpectedly. After seeing two different doctors we received the news that our baby had stopped growing and had passed away. Two years later, to the day, we were back at our gynae for our 12-week scan with Charlotte.
Hearing her heartbeat for the first time was the most exciting and thrilling moment for us. We were washed with relief that she was alive, healthy and growing well! Our subsequent scans continued to go well, our little bean was growing and thriving as expected. At our 21-week anomaly scan, she flew with flying colors, almost, as her growth was slightly behind. My blood pressure was also ever so slightly elevated, but our gynae brushed it off to the nerves and fears experienced by most expectant mothers.
The day after our scan my feet suddenly started swelling. I called my gynae and was reassured that swelling was perfectly normal, especially considering I was having a summer pregnancy. Two days after that I developed a slight headache and when climbing a flight of stairs I felt faint and out of breath. A check of my BP indicated it was dangerously high and that I should immediately head to the hospital.
I stayed for 2 nights while my BP was monitored and I did a 24-hour urine test. The results of my stay and tests indicated the start of early-onset preeclampsia. I was sent home and placed on strict bed rest, no work of any kind and to check and record my BP every 3 hours, as well as check our daughters’ movements. I lasted a handful of days at home before my BP readings became erratic and Charlotte’s movements could only be felt after a strong cup of coffee or eating sugary chocolate.
Again I was admitted, hooked up to a BP monitor and being put to task with completing another 24 hours urine test. I was 22 weeks and 3 days pregnant at this point. I’d done the forbidden and Googled our illness. The prognosis was not good. Charlotte was not growing and because her gestational age indicated that she was not viable nursing staff were not allowed to use a Doppler to check her heart rate and movements. I drank copious amounts of caffeine to stimulate her into moving enough for me to feel her and be reassured that we had not lost her.
On the evening of our second night in hospital, my gynae walked in, stood at the foot of my bed and his expression said it all. For reasons still mostly unknown, my body was rejecting this pregnancy, our daughter. She was too small to survive. We would never make it to full term and he doubted that we would even make it to viability for her. Her growth and development were being stunted. My kidneys and liver showed signs of strain. The outcome was grim and his recommendation was immediate termination. He was cursory, there was little sympathy extended to me and zero hope that she would survive to live any form of a functional life. He informed me that he was on leave for a few weeks and was doubtful that I would still be there when he returned. As he turned and walked away Charlotte gave one of the strongest little kicks that I ever felt from her. Her affirmation to me that she wasn’t done fighting.
I had never felt such fear and hopelessness. The nurses called my husband to come immediately. I lay devastated with the thought that, once again, my body had failed our baby. A soft voice from behind a curtain started to console and reassure me. She asked me to hold on, to not give up, that the fight wasn’t over yet. I will never be able to express to Claire how much of an impact those words had on me. Here was a woman, a complete stranger, with her own daughter born premature and in the NICU, comforting me.
The following morning a new gynae walked up to my bed. Her positive energy gave me hope. She was compassionate, understanding and unwavering in her support. She promised to be with me every step of the way, regardless of our decision going forward. With her experience in my condition, she assured me that she would give us the very best chance if we chose to fight. That she would do everything in her power to keep Charlotte and I safe for as long as physically possible. She kept her word and has been with me on this journey ever since.
At 26 weeks and 2 days I developed what I initially thought was food poisoning. I lay with my head in a toilet bowl, sick to my core and unable to even stand, I summed up enough strength to reach up and hit the panic button for help. The reality was that my body was going into shock, my organs were shutting down. My lungs and body filling with fluid. Charlotte’s movements had all but stopped and that night nurses broke protocol and connected us to the Doppler to hear her heartbeat, it was strong and she stubbornly let us know she did not like being poked by kicking the Doppler off my stomach. After further tests came back with shocking levels of protein in my urine my new gynae came in, sat beside me, held my hand and told me it was time. We would be delivering in the next 24 hours. We were scheduled for a C-section the following morning.
I was placed on stronger BP medication and placed in CCU and connected to a Magnesium Sulfate drip to assist in hopefully preventing a stroke in myself and/or Charlotte.
Charlotte was born at 7:32am on the morning of 6th May, 26 weeks and 3 days gestation, 14 weeks premature, weighing in at 620g and 31cm in length. We were forewarned that it would not be a joyous occasion. In spite of me receiving steroid injections to help her lungs strengthen, they were still severely underdeveloped, she would not cry and she would need immediate assistance to breathe and get her lungs working. She did cry though, the gasps in the room from all the professionals present indicated that this was not expected. Her paed shouted out ‘oh my sweetheart, you are a fighter’. She was prepped and taken almost immediately to NICU, they allowed me to kiss her forehead. Her head was impossibly small, I could barely see it hidden underneath the impossibly small beanie that was far too big for her tiny little head.
I was closed up and sent to recovery before being taken back to CCU for a further two evenings of observation. I did not know it at the time, but during her delivery, my kidneys stopped functioning. A dialysis machine was placed out of my sight in recovery, staff checking my vitals every few minutes to see if my kidney function would return or if I would need to be connected. I’ll never forget the look of excitement on one of the nurses when I asked for a glass of water and thirty minutes later my catheter bag indicated that my kidneys were fighting back.
The next two nights were agonizing, the magnesium drip causes heat in your body that is indescribable. The fogginess in my brain from all the medications I’d received had me feeling anxious, terrified that my mind would never again be clear. The focus was on bedrest and recovery, I wasn’t allowed to sit up, I wasn’t allowed to see my daughter.
I met Charlotte on Mother’s Day. I could barely make out her tiny body in the dark, moist incubator. There were more pipes and wires than there was baby in that incubator. Her skin was paper thin, we could see the blood coursing through her veins. Her face was hidden underneath a CPap mask that was helping her breath. I wasn’t allowed to touch her, even if I was, I don’t think I would have, she was so tiny, so delicate and fragile. In spite of her appearance, her nurses assured me she was doing incredibly well, that she was surpassing their expectations. When I walked out of her room I met eyes with another mom sitting next to her daughter. She had the look in her eyes that indicated she knew exactly what I was going through, she smiled softly and told me ‘Your Mighty Mouse is a fighter’.
The name stuck and she has been Mighty Mouse ever since. Also ‘Diva’ as her nurses affectionately called her. She spent 92 days in NICU and in spite of many setbacks along the way, her stay was seen as exceptionally smooth and uneventful, even if it didn’t feel like that to us.
A Little Miracle
By all accounts, our Charlotte is a walking miracle. In terms of her prematurity and birth weight (almost half of what it should have been) she had a 50-70% chance of survival.
Survival without serious or minor lifelong deficits or complications is unlikely for many children born so prematurely. Her lungs struggled with Chronic Lung Disease and still now, at 2.5 years of age, if she catches a cold we have to monitor her closely and pray it doesn’t enter her lungs. Steroids used in an attempt to strengthen her lungs after birth had a high chance of causing Cerebral Palsy. She could have experienced brain bleeds clots, hydrocephaly, organ failure, NEC, Retinopathy of Prematurity and so many other terrifying issues.
She has struggled and continues to struggle with growth and weight gain. We’ve spent the last 2 years doing feeding therapy with her. She experienced reflux from 3 months old which caused feeding issues and oral aversion. She’s had NG feeding tubes and we’ve advocated ad nauseum against permanent feeding tubes since she was diagnosed. She has an overbite and high palate caused by being intubated for so long. Her lower jaw is very small and her tongue too large for her mouth. All of this has created an inability for her to learn how to suck and swallow correctly, a skill babies learn in their third trimester of pregnancy shortly before birth.
She has minor issues with muscles development and strength in her core, so we work extensively on encouraging her to play with specific equipment and exercises which help develop her muscle strength. She has inners in her soles to assist in supporting her week arches.
Developmentally she has been phenomenal with little to no delays in reaching the required milestones in her development. Her speech is advanced for her age.
Her immune system is growing from strength to strength. Micro preemies are born with no immune system to speak of, keeping her isolated for the first year of her life was hard, but necessary. She still falls ill with colds on a regular basis, but she is starting to recover from them as quickly as healthy full terms kids would.
Her height and head circumference continue to grow and catch up on growth charts, in spite of her weight gain not following suit. Regardless of how much or how little she eats, weight gain has always been a struggle, one which I’m finally making peace with, knowing that she will never ‘catch up’ to her peers in weight. And knowing that in spite of this ‘problem’ that she is healthy, happy and alive!!!
I initially started sharing our journey to highlight that being pregnant is not easy or pleasant for many women. Admitting that you may not necessarily enjoy being pregnant is more often than not frowned upon, and it shouldn’t be.
After I fell ill I used it to share information and updates to loved ones. Our Facebook page and blog progressed over time. Articles on aspects of prematurity, preeclampsia, HELLP syndrome were shared. I shared our progress in the hopes that it would reach someone facing the same situation and offer them the hope that they too would make it through to the other end.
I’ve had mothers from all corners of the world reaching out to connect, and sharing their journeys, asking for support and thanking me for highlighting a serious illness that affects nearly 5-8% of pregnancies.
I continue to share information about preeclampsia to create awareness. To encourage expectant mothers to trust their instincts and ask for second opinions if they start experiencing symptoms and are not being heard by their doctors.
I share our journey as a testament that as women, and pregnant woman in particular that we have a right to decide what is best for us and for our unborn children. That while termination is and should be an option that choosing to fight is equally relevant.
There are no certainties in life, and in particular in a journey like ours. I have met and become friends with many women whose stories have ended as ours has. Others who were not able to take their children home with them. I’ve met women online who advocated and created awareness of preeclampsia. One woman, in particular, ran a blog that focused on creating awareness of preeclampsia and tragically passed away after the birth of her third child as a result of preeclampsia and HELLP syndrome.
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, Karin had this to say:
She needs to know that nothing she did contributed to developing this illness. Nothing. At. All. She is not to blame. She is not a failure.
She needs to know that if her life is under threat and if her child is suffering and in pain, that choosing to terminate does not make her a terrible person. It makes her compassionate. It doesn’t negate that her child was loved and wanted. That she is still allowed to mourn her loss without shame. That she is allowed to choose her life and that of her other children.
She also needs to know that she can fight, for herself and for her child. That there is hope. That miracles do and can happen.
She needs to know that the choice is hers to make. To not feel bullied or pressured into making a decision based on one doctor’s prognosis. To get second opinions. To be informed as much as possible before having to make an almost impossible choice.
She needs to know that neither I nor anyone else can promise that it will be OK. But that there is hope and where there is hope there is light.
She needs to know that she should seek counsel in the form of a certified therapist who has dealt with something like this before. The stress and fear levels are not to be ignored. That her mental health is equally important as her physical health and wellbeing.
Let me introduce you to a very special mom, a mom whose story of her brave little girl inspires me every single day. Andria van Niekerk has agreed to share Gia’s story with you as she tries to create awareness about GBS and help other families who may find themselves in similar situations.
Wife, mom, therapist. Foremost I am a wife to my best friend/husband of the past 2 and a half years. I am a mom to Gia Anne and Karter and have been a speech therapist and audiologist for the past 11 years. Juggling motherhood and being a career woman is tough, but I am beyond passionate about my profession and even more so after Gia, that the pros far outway the cons.
I used to be able to very easily describe myself. I knew who I was and what I wanted out of life. After Gia, I am finding my way again. Karter has brought me so much joy and continues to do so, and daily he helps me learn my place in the world again.
Putting Gia’s story into words still remains the toughest
part of my day, let that be on paper or verbally. First I struggled out of
anger, which phased into pain but now I struggle because how does one describe
and give justice to the story of a tiny baby who taught so many how to fight,
how to truly show determination to live when the odds are stacked against you,
so here I go….
Gia Anne entered the world on the 13th March 2017 at 10:40am weight 3.75kg and 55cm, the day before my birthday. She was just perfect! Ev and I were in awe of this little girl. The doctor was happy with both of us.
Two weeks later, my precious little girl was admitted into NICU isolation with severe infection. All I can remember about that day is doctors taking her out of my arms and putting tube after tube in her. By the time we were allowed to see her she was on a ventilator and lying in the incubator so still. She looked so innocent and helpless and my heart broke right there is the isolation room.
We were informed that her CRP (infection count) which is meant to be under 5, was over 300 and that she had a severe GBS infection. Test after test was done on her tiny body including a lumbar puncture and a couple days later, we received the worst call, Gia had streptococcal meningitis. The most deadly ruthless bacteria anyone could contract. We were informed that we needed to prepare ourselves for the worse.
After watching her lie in the incubator for over 2 weeks, and with me constantly looking for the answers “how”, “why”, “when”. Fighting with doctors. Waiting for daily CRP updates. Watching her monitors closely. Counting how many breaths she took on her own compared to the ventilator assisting her. Crying. Screaming. Ev looked at me with wide eyes while I shouted at a nurse who was just so negative about my baby’s future, and said “she is reacting to how you react. She is reacting to your moods, her stats change according to you”… and that is the moment the mamma in me took over the anger and pain.
I walked into her isolation room and I lectured my month old baby. I told her that we are fighters. That we don’t give up. That we are strong and brave and that no matter what the future holds, it’s her and me together facing the world and that SHE is my light! my heart! my world! my everything. And things started changing. My baby girl started to fight like no human being I have ever encountered. She started breathing on her own. Her CRP count started dropping. And we started to work on her sucking so that she could be bottle fed again.
I realised that as mothers, all our babies need is for us to believe in them. To have faith in them. For them to know that we will fight for with and with them. But mostly, that no matter what, we love them with all we are. There are zero conditions to the love we have for them.
After 35 days living in a hospital and sleeping on steel chairs as I refused to leave my baby, even though I was only allowed near her 3 times a day for 1 hour, she was discharged and came home. She wasn’t opening her eyes and she no longer cried, but my baby was alive and in my arms.
We took her to endless specialists – ophthalmologists, pediatricians, neurologists, occupational therapy, physiotherapy. My life was consumed by her and her needs and I didn’t care. I wanted everything to be “Gia”. It was all about giving her the BEST chance in life we could. As a qualified speech pathologist and audiologist, I knew what life for a child with severe brain damage could mean and how important early intervention was. I also knew that Gia was a fighter and she showed us daily was she was able to achieve.
Our trip to South Africa in June 2017 did not go well. Gia contracted a bad chest infection and was once again admitted to the NICU. The infection went to her brain again, but this time was stopped very quickly with the use of steroids. And so I spent another 8 days living in a hospital. Doctors were once again not hopeful. But I informed them that they have no idea who they are dealing with. That my little baby is a fighter. And once again, this little girl showed them. They were all shocked at her recovery. But 2 weeks later, she was once again in ICU with recurrent pneumonia. She spent a further 8 days in ICU. This time she was discharged with oxygen as her saturation levels were not stable, and without the 5% oxygen, she wasn’t able to breathe on her own. We were unable to fly back home to Dubai until she was off the oxygen, so once again, mamma had to have a stern talking to her baby. It took her a few days, but she weaned herself off and a week later we were able to leave.
Gia was doing well. She was now on epileptic medication, a variety of vitamins and opening her eyes more. She even laughed the one day – the sweetest sound I had ever heard. She was doing well. Lifting herself when on tummy time, sitting with pillow support. We were so proud of our little girl. We knew the road ahead would be tough, but we also knew that she was a fighter. And she didn’t give up easily.
On the 24th September 2017, we rushed her back to the hospital. She was coughing up coffee ground mucus and couldn’t even keep water down. Doctors couldn’t pinpoint what infection she had. And at 2am, we were called to inform us she had to be ventilated. We rushed back to the hospital immediately and I held my baby’s hand watching her. The doctors were unable to find veins for drips and were using a central line to assist her. They were pumping her with medication to keep her alive. Late in the afternoon on the 25th September 2017, 24 hours after we had rushed her to the hospital, she was holding super tight onto her daddy’s finger, she opened her eyes and looked into mine, and I just knew. I knew she was telling me she was tired and just couldn’t fight anymore. I looked at her and told her it was ok. That I wouldn’t ask her to fight for me anymore. That I loved her and I was so proud of her. That she gave me 6 and a half months of love and pure joy. That I wouldn’t be angry if she wanted to let go.
And let go
she did. Even with the ventilator, all the medication and over an hour of CPR,
Gia Anne grew her angel wings and went to heaven at 11pm that night.
Gia Anne left a huge legacy. Her story is own worldwide on social media and her fight is honored by many.
GBS stands for “Group B Streptococcus”. GBS is a type of bacterial infection found in pregnant woman which can be passed through natural delivery. It affects 1 in every 2000 babies. GBS is rare in pregnant women, however, if a baby is affected, their outcome can be severe. At around 37 weeks pregnant, a high swab will be taken by your doctor to test for GBS. If you are tested positive, the doctor will give antibiotics to you and possibly to the baby. I was tested negative with Gia, which leaves so many unanswered questions. Again with Karter, I was tested negative, however, our amazing OBGYN Dr. Jozsa decided on a birth plan early on which we stuck to and Karter and I both were given antibiotics as a precaution. There are great GBS associations that I would highly recommend to all mums to be and mums to read and spread the word so that as many people around the world can learn about this deadly infection. And for mums who opt for a natural birth, insist that your baby receive the antibiotic for GBS regardless if you have tested positive or not. The more women who insist on the antibiotic the more likely it will be part of newborn vaccines.
When asked what advice she has for families in similar situations and the importance of a support system, Andria had this to say:
Ask for help. I will never forget the day I sat at the hospital and wrote the post on my mom group that I needed prayers. Within seconds I received over 100 messages of love and support and “what do you need”. There is also a very good friend I want to name, although she will probably not be happy with me, but the minute we arrived at the hospital the first time, I called Dania and I am not exaggerating when I say that 10 minutes later she walked through the hospital doors and took me in her arms and let me just cry it out. So cry. Its ok to cry. Be angry but don’t hold on to anger. Find the joy in tiny things. This is during the hardest times and when those times have passed too. Take things one step at a time. If you only sit up in bed and then decide you cant do more, pat yourself on the back for the step you did take. Each day you will get a little further, but if you don’t, don’t be hard on yourself. Time doesn’t heal. I call bullshit on that. What time does, is show you that you are moving forward. It means that you got through another second, another hour another day. It shows you a new way to live with pain. You are stronger than you give yourself credit for. Cause you never actually know how strong you are until you have no other choice to be strong. Never neglect your husband. No one asks the “dad” how he is. Everyone focuses on the mom, but dads are feeling the same as you are, the pain you are feeling. So give your husband the chance to break down too. And never ever stop being a mamma.
I can not even begin to explain the importance of a support system. I remember standing up at Gia’s memorial and staring back at me were over 200 faces and every single person in that church had either sent us messages, given us calls, sat with us. Then over and above that, were the messages from people worldwide which I still receive to this day. Whenever I feel like I am about to break, I reach out and there is always someone there to bring me back up. Don’t ever try to go through things alone, because you not.
Andria is in the process of setting up a foundation in honor of Gia. She says that the foundation is not about money, it is about “FIGHT, LOVE, and CARE!” and a place where Gia’s legacy will live longer then they will!
Gia also now has a beautiful baby brother named Karter who is 6 months old.
In Loving Memory
Gia Anne van Niekerk 13-03-2017 – 25-09-2017
There was an error retrieving images from Instagram. An attempt will be remade in a few minutes.