Little By Little
A warrior, a fighter, an inspiration and a mother, this woman embraces a new challenge every day. She masks the fear of unknown with a positive and optimistic attitude. Neena Nizar has a chat with Aasim Yacub. She shares her story, from a diagnosis of Jansen’s Metaphyseal Chondrodysplasia to steering towards a cure for this rare disease!
-> 3 adjectives that best describe you!
* Compassionate
* Relentless
* Tenacious
-> How was your journey Enroute to getting rid of ‘self-prejudice’ and accepting yourself for the person you are?
There was no option not to accept who I was; the lack of choice saved me from a very difficult path. Born with an ultra-rare disease, (unnamed at the time) – Jansen’s Metaphyseal Chondrodysplasia which affects roughly 30 people worldwide, I spent a lot of my time in hospitals. My experiences could have broken me, but I chose very early on not to let my disability define what I could accomplish with my life, the people I could reach with my story, and the change I could bring about through persevering and hoping.
Every morning, I wake up and choose happiness; I simply refuse to let the negativity and pain dictate my day. Ironically, I choose to dance in the freedom that comes from this decision, not to deny my disability, but to embrace it.
-> You have inspired many, however, who has been your inspiration through everything in life?
I was 3 when I decided my father was my hero. I’ve never been a fussy kid, and my father was never one of those over-dramatic fathers you see pictured so quaintly in soap operas. I never sat on his lap while we shared a “heart-to-heart” or a “philosophy of life.” He never read bedtime stories or played piggy-back. Instead, he was my “matter-of-fact” man. He had a job to do and he did it. I cannot recall my father ever crying over me, or pitying his plight. I’ve never seen him not search for answers. But most of all, I’ve never seen him lose hope, or hang his head low in defeat.
Nowadays, my inspiration lies in my two little boys who are fighting their own brave battle.
8 year old Arshaan Adam and 6 year old Jahan tackle surgery, therapy, and recovery with equal aplomb. In their moments of pain and anguish, they look to each other for support. Their love and ability to smile and live their “New Kind of Normal” inspires me every day to work harder for them.
All parents set out with expectations, hopes and dreams for their child. When a child is diagnosed with a progressive rare disease, these aspirations are altered. While one parent is hoping to kick their first football, another is praying that they can get through a day pain free.
The boys fight many wars; most of these are internal. There is a disconnect between what their souls want to do and what their body can. The battle is always intense. They have quickly learned to find happiness in little things and that life doesn’t always go the way you want, and that’s okay. We can still move forward.
-> Share with our readers, how did you find out that you were diagnosed with JMC?
While I was always a sickly child, Arshaan in contrast, was a healthy child at birth and for the two years. At my 4 month ultrasound with my second son Jahan, I was told the baby’s limbs were off by 6 weeks. At that very same time, Arshaan’s ankles began bending. I raced to find answers because what I was seeing was in many ways different from what I had. The boys presented with hypercalcemia and hypophosphatasia – symptoms that were never part of my medical history. In sheer blindness, I groped for endless hours with experts the world over. The reply was always the same: “We don’t know what’s going on with your boys.”
After several dead ends, ready to give up, I made one last attempt. After travelling 7 hours by car and sitting in a hot and humid waiting room for nearly 5 hours, we walked into the consulting room of
Dr. Sheela Nampoothiri, a pediatric geneticist from Amrita Institute of Medical Sciences in Kochi, South India. Dr. Nampoothiri took one look at our x-rays and very calmly said: “I think I know what you have!”
The news was like bright rays of sun searing my eyes, exploding storms.
Dr. Nampoothiri had specialized in orthopedics in Germany, where her professor had shown her a slide of a patient with Jansen’s Metaphyseal Chondrodysplasia. The professor had skipped quickly past the slide saying: ‘this is so rare… you will never come across a case in your lifetime.” But she did come across it. She was looking at not one case, but three! From the streaky nature of Jahan's xrays, she knew instantly that I and my boys had Jansen’s Metaphyseal Chondrodysplasia, an extremely rare progressive skeletal condition that affects only 30 cases worldwide.
After 32 years of living with a misdiagnosis of "rickets", "vitamin D deficiency" and an overwhelming "I don't knows", we were finally able to name the enemy!”
-> What do you find best in your life?
Hope! Staying positive. Keep on keeping on! And I don’t mean staying positive will turn everything right. Rather, it is knowing that you will be fine no matter how things turn out.
There’s always a bigger plan that we may never fully comprehend. And we are constantly trying to find meaning in everything around us, especially in suffering. I’ve really stopped asking “why” a long time ago and focus on doing the best I can with the tools at my disposal (like my dad!) I choose to swell in love, the love I see in my boys’ eyes for everything around them, the love in our little family and the love that springs from others’ stories that are now intertwined with ours.
-> What is the most common reaction you observe in a person you meet for the first time and introduce yourself and talk to them about JMC?
I think the first impression of me is “oh she’s small!” and that’s okay because, guess what? I am small! This isn’t a fact I can mask by makeup or Photoshop (not yet anyway!)
When we see someone with a profound disability, a fleeting thought occurs: "What if that were me?" from which we quickly turn with a shudder. Here is a person– less than four feet tall with misshapen limbs. Not knowing how to act or respond to someone very different from the norm can be scary.
My disability does give me a chance to enter into meaningful conversations. These are ideal situations to speak openly and reassuringly about responses to unfamiliar situations and to point out commonalities beyond the disability. Speaking about feelings as uninformed, stemming from ignorance and lack of understanding can be liberating.
The actual process of integrating people with and without disability evolves over time. We learn to accept and know people through situations and experiences. Once the myths and mysteries surrounding a false stereotype are removed, diversity can be appreciated rather than avoided.
-> The oldest person diagnosed with JMC, a survivor, an inspiration and a mother. Which role do you cherish most?
I often have to remind people who call me brave or inspiring that courage and strength does not mean the absence of fear –I have plenty of fears! Fears for my health, for my kids’ health, for others affected by jansens!
Rather, it's refusing to assume the role of a victim that gets me up every day!
I don’t feel brave and frankly I cringe at the word. Every hospital visit, someone will tell my boys “be brave” and they reply, “I cannot. I am only a little child”. The word “brave” is loaded; it ensnares emotion and stifles you. I like to think we do the things we do for if we didn’t, it would crush us. We are by no means “brave”. We kick, scream and flail through the hand that has been dealt. And the pain of all these experiences simply prepares us better for what is to come.
I don’t know if I’m the oldest. We are still searching for others out there and I’m sure there are.
I love the role of mother best. I love being able to tell my kids every day that it does get better, and you can find happiness even on the dark days. I think having “insider” knowledge of JMC is vital to help them reach their full potential. I believe my parents had an enormous hand in turning me into the positive person I am today. That sweet power of a parent is undeniable and I see it in action each day with my own boys.
Motherhood has been the great equalizer for me; I started to identify with everybody... as a mother, you have that impulse to wish that no child should ever be hurt. So it fed right into my role of a Rare Disease Advocate.
->You initiated The Best Buddies chapter in the UAE, what was the cause behind this awesome initiative you took?
The Best Buddies sprung from what I was already doing in my classroom even before the idea took shape. Integrating children with special needs into society has always needed a call for action in Dubai. I believe BB is still going strong with EIS and The Millennium School, Dubai.
->Which project are you currently working on? What’s the target of this initiative?
Finding a cure for JMC is my current project. Goal: https://www.thejansensfoundation.org/goal/
->If your life was to be made into a film, what would be the name of the film? Who would you cast to play you?
‘The long road to a cure! The JMC story’
Definitely not an able-bodied person! The portrayals of disabled people that are considered the best, those that win Oscars for able-bodied actors, are often described as being "sympathetic" to disabled people. This supposes both that sympathy is what disabled people are seeking from the able-bodied and that it is the best we can hope to get from a filmed depiction of our lives. We do not want sympathy. We want equality.
Also the disabled community can speak for itself, through our own actors, and we do not need to be represented on screen by someone aping a disability.
So while I’m sure this was a light-hearted question, it does show how we still have a long way to go in changing our attitudes towards disability.
-> If you were to reverse your life and alter something, would you do it? What would you change?
When I see some of the pain my boys go through, I wish I had never met Adam and taken the plunge to marry and become a mother. But at those very moments of hopeless despair and disillusionment, I am always reminded that there is a bigger plan and purpose to everything that is happening in our lives.
Today, Arshaan and Jahan are real superheroes by participating in research for a cure for Jansen’s.
So do I want to change anything? No. I’m still giving love a chance. I love my boys, my life,and am thankful for this incredible journey.
->UAE is celebrating the ‘Year of Giving- 2017’, what message do you have for the young change makers and contributors of today?
The Jansens’s warriors are a very small, almost miniscule group, yet we have been making a great impact in the Rare Disease Community. Our youngest warrior is three and a half!
You often worry you are too young or small to make a difference, that your hands are empty to give, but even at those times, your heart can be full of warm hugs, kind words, and sweet things to help soothe a wound and make a change. Leadership starts with you.
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If you want to hero up for a cause, please consider donating to the Jansen’s Foundation: https://www.thejansensfoundation.org/donate/
Or contact us to see how you can help make a difference:
thejansensfoundation@gmail.com