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Guest Blog by Neena Nizar Adam

Our Story

In 2008, Adam and I were planning to start a family. At the time, we were plagued by uncertainty and fear. Dozens of corrective surgeries from an unknown skeletal dysplasia had left my body weak, and I wondered if parenthood was even a possibility.

We were heart-broken by the grim conclusions we received: you will never have a child; if you do, your legs will break out from under you; the child will not make it to term.  I painfully recalled this fear as a strong contender for never wanting to marry. Then, Adam had said, “You have to give love a chance.” Now, too, he was quick to comfort me: “Anything is possible if God wills it.”

True enough, on July 3rd 2008, I delivered a beautiful baby boy.  We named our 8lb cherub, Arshaan, Persian for, ‘A Good Man’. 

For the next two years, we basked in watching our little one achieve all his milestones. Talking at 9 months, walking at a year.  It was clear Arshaan had taken after me with his big expressive eyes, but there was no sign of any disease in his body.

But all that changed when our boy turned two. Almost overnight, we began to see little worries creeping up: widening ankles and wrists, narrowing of the chest. We took him to a doctor who assured us, “it was all in your mind”.

By May 2010, we were preparing to welcome a second baby into our lives. But the fourth month ultrasound revealed “limbs about 6 weeks off”.  Suggestions were made to end the pregnancy.

However, we stood firm in our Faith; we were going to love our baby no matter what.

Arshaan was now walking with a distinct waddle. There was marked swelling in his knees, and his once long pointy fingers now looked choppy and weak.

I started digging up my old medical records to see if there was something that could lead us in the right direction. However, the deeper I went, the more I was convinced we were dealing with something so confounding and mysterious it would take a true miracle to find the truth.

Every ultrasound of our new guy filled us with worry. I knew if we remained in Dubai, I would lose my mind. I decided to quit my job as a high school teacher and travel back home to India. The next seven months were a blur.

On October 14th 2010, I gave birth to Jahan, Persian for “Savior”.

Amidst the quiet celebration, we hustled. We raced to find answers. In sheer blindness, we groped at 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 endless dead ends, I was ready to give up. But we 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 able to name the enemy!

That November night, I googled the words “Jansen’s” and found Little Levi, a 4 year old boy in Mississippi, who was also diagnosed with Jansen’s. The chance discovery began a beautiful friendship between three young boys on a miraculous journey.jan

Armed with this new knowledge of a confirmed genetic diagnosis , we decided to return to America and seek treatment and a better quality of life for our boys. In March of 2015, we met with the brilliant orthopedic surgeon, Dr. Mackenzie of Nemours/Alfred I. duPont Hospital for Children, Delaware. By then, the boys’ legs were so bent up, surgery was inevitable.

In July, both boys underwent bilateral osteotomies and corrective surgeries to fix their lower legs. The results were unbelievable.

But the results were short lived and as new bone formed, the bends were back with a vengence. The surgeries were only temporary solutions to the symptoms of this relentless condition. We needed to find a cure.

Investigating everything available on the Jansen’s led us to Dr. Harald Jueppner, a pediatric nephrologist at Massachusetts General Hospital.

Dr. Jueppner had been researching Jansen’s for 20 years, but never met a patient with the condition. In February of 2016, at the Rare Disease Conference at Capitol Hill, he met me.

jannThe meeting was monumental for both doctor and patient. We were excited to learn of all the wonderful work Dr. Jueppner and his team had been doing, and were totally taken aback to learn about the Jansen’s mice he had in his Boston lab!

Now we could directly help with his research by providing valuable data via blood tests and lab work, and in November, we travelled to UCLA to give sample bone and cells in order to better understand the condition.

Living with an extremely rare condition can mean never fully sleeping at night. There is a constant anguish deep within.

Simply getting to a diagnosis of a rare disease can be a complicated, lengthy, and frustrating journey for people because many health care providers may have limited experience with the identification and diagnosis of rare diseases. Also, diagnosis before symptom onset or diagnosis early in the disease can be challenging. 

However, a time of progress and hope is upon us. Biopharmaceutical researchers have leveraged new technologies and the growing scientific understanding of many rare diseases to develop groundbreaking therapies over the last 10 years. In the last decade, more than 230 new orphan drugs were approved by the U.S. Food and Drug Administration (FDA). In 2015 alone, nearly half (47 percent) of novel new drug approvals were for rare diseases.

We are on an incredible journey to find our miracle cure that will not only help our boys, but bring hope to many others with rare skeletal diseases.  

We believe in miracles.

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– Neena Nizar (The Adam Boys’ Mom)

Visit https://www.thejansensfoundation.org/

 

 

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”All readers are aspiring writers in a way…”

I have just finished my second reading of ‘Norwegian Wood’ by Haruki Murakami. I first read it a year and a half ago after I had acquired it on Aamzon while searching for Paulo Coelho’s ‘Manuscripts Found in Accara’.  The choice seemed random, yet something told me to purchase it instead. ‘Norwegian Wood’ was an immersive experience. Nothing can prepare you for the way a Murakami plot (or lack of) can grab you and pull you in.

My first reading of Norwegian Wood was not as great as my second. At first I think I perceived it to be just pointless surrealism. As a result, I was always uncomfortable afterwards because I continue to profess Murakami as one of my favorite contemporary authors, yet, I greatly disliked one of his most celebrated works. However, the second time around was better. This time I could see more beauty in Murakami’s prose. There were moments when I read sections that gave me that same uneasy feeling that I had encountered before but I was able to find more to love in the novel than previously.

I’ve rambled on in prior posts about why I love reading Murakami’a works and I am certainly not in a mood to attempt a post-reading analysis on this one. What I did come away with (despite a sense of utter helplessness for Toru ) is a sense of awe for Murakami.

The man is a master wordsmith, weaving words into thoughts that can reach your sub-conscious mind without any effort at all. Despite the loose ends that mark Murakami’s works, the stories shine like stars because those cut strings add to the fantasy of it all. Using exceptional descriptions and dialogue, Murakami conveys the deepest, darkest—often hidden—sides of human nature. Many of his characters experience a type of universal, human despair that forces them to question reality. His stories are profound and bizarre at the same time leaving readers with a feeling that is, well – indescribable.

But here’s the thing, when Haruki sat down to write ‘The Wind-Up Bird Chronicle’, he didn’t have a plan. When Margaret Atwood wrote The Handmaid’s Tale, she didn’t know what was going to happen or how it would end. Perhaps, when I sit down to write my story…

inzDon’t get me wrong: I’m not comparing myself with these literary greats, not in terms of talent. But it does give me comfort and succor to know that I’m not the only person who starts simply with an idea, an image, a sentence, and that’s it.

Someone told me this morning that at our core, every passionate reader is an aspiring writer too. That’s certainly true of me and my hope is that in the process of writing and re-writing, I’ll discover a story along the way as well.

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What are your values?

As part of a leadership and management course I am currently enrolled in, I have been asked to reflect on what my core values are. Sounds pretty straightforward, doesn’t it? But the truth is, listing the central principles on which my life is built, is so much more difficult than it seems.

I started by categorizing them under the headings of ‘personal values’ and ‘professional values’ but soon found that the two are inextricably linked. As I sit here staring at my screen, typing and undoing all the words I try to string together, I am conscious that this list is in no way comprehensive. In fact, over time, some of my values seem to have changed. I guess as we grow and succeed, our values change and that makes it so much more important to re-evaluate where you are in your life and what your beliefs are, every now and again.

There are some core values that have to be listed by default, like respect for example,
Without a culture of mutual respect for all, people will not come together as a team. The same goes for honesty and truth and the importance of relationships. But after consideration, I felt that all of these hinge on three values that are ‘all –encompassing’ in so many ways. If these three are in place, the others seem to take shape organically.

Integrity and loyalty are at the bedrock of who I am. They are two character traits I think we all desire in ourselves and in others as well. It is important to me that people see me as honest and dedicated. So much of what we accomplish as educators revolves around how we are perceived. Going hand-in-hand with these two is consistency. I think consistency is what separates the average from the great and while it is important to all areas of life, it is so much more important to educational leadership. In my ten years of teaching and educational management experience, I have noticed that when leaders display consistency they are able to tap into and harness peoples respect and trust in order to accomplish their collective goals.

I remember an analogy used by the Dalai Lama, If we think of ourselves as trees, values are like roots that keep us grounded. If you stretch that analogy, you could say that a strong tree with deep roots, supports the ecosystem around it. I guess that’s what makes, knowing your core values so essential. When you have an important role to fulfill and a team to lead, you’ve got to identify and examine the pillars that support your practice.

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‘What do you want to do when you grow up?’

Almost every day I listen intently to the hopes and dreams of teenagers who cannot wait to take on the world. They debate college majors and lay down their blueprints for educational paths that sparkle with possibilities and promise. They seem so clear, so certain and so self-assured. They know where they want to be in five-ten years and they’re certain that they’ve figured out a way to get there.

I sometimes have to fight the urge to chip in with a ‘are you sure this is what you want to do?’ The truth is I am soon going to be 32 and the question from my childhood ‘What do you want to do when you grow up? Is one I still struggle to answer.

Wouldn’t it be pretty awesome to wake each morning and be certain that you’re on the right path towards your goals? To know with certainty that you’re headed in your right direction? To not have to worry about distractions or interruptions or choices….oh! choices….that deserves a whole other blog post!

When you’ve come face to face with the ragged edges of adulthood you learn quickly that life isn’t all butterflies and roses. Beneath our longings lie the chains of expectations -those, projections, hopes and dreams that we may not even recognize or know exist.

Let me just say that I am very happy doing what I’m doing at the moment and my current life experiences do not take away from me figuring all of this stuff out – they are a critical part of it but I still  find myself wondering what more can I do? What should I do next? Where should I be? The questions come in torrents, the answers, not so much.

My friends tell me to relax, to keep doing what makes me happy and that I have ‘forever to figure this stuff out’, but with each passing day forever seems to diminish a little, the fog thickens and the vision becomes a little more blurred.

What if there is no one true calling for each of us? What if there are multiple callings throughout our lives as we grow and change? How does one prepare for this scenario? How do we ready ourselves to develop an awareness, an understanding and an acceptance of it ? How does one successfully morph into the best version of themselves without an answer to these questions?

Sigh!

Anyway, all I’m saying really is that a sense of unmet longing hovers over me sometimes, like a cloud and I wish I could decode those longings to give them a shape and form and then try to figure out what to do about them. Until that happens, I remain comforted by one of my favorite verses from Proverbs

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Perhaps the uncertainty is part of the journey, perhaps it’s a test of faith. So if you’re like me, you plant a seed, you water it and then…you wait. But in the meantime, it’s not wrong to wonder what the future has in store.

 

 

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Georgia On My Mind

Last winter a friend of mine backpacked solo across Georgia in Eastern Europe. His social media updates and the pictures he kept sharing were enough to convince me to plan a trip of my own. I had heard amazing things about Georgia from other travelers too and could not wait to explore the country, though sadly I only had one short week to split between Georgia and Baku, Azerbaijan. I will keep details of the latter for another post.

While my exploration of Georgia was far from thorough, I did leave with one solid impression of the country: I love it! Its beautiful mountains, historic churches, European vibes, and incredibly good-natured people didn’t need more than a week to win my heart over. I will absolutely be returning to Georgia again someday, hopefully soon. Hopefully in snow.

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My co-travelers and I managed not just to take in beautiful Tbilisi, but the absolutely amazing countryside as well. Our first trip outside the capital was to Gudauri, 7200 meters above sea level and 80 km from the Russian border. The panoramic views were soul stirring to say the least – the kind of experience that will remain with me forever. We also managed to travel to Mtskheta, one of the oldest towns in the country and to also to Batumi and Kazbegi, villages that are home to the Black Sea and absolutely stunning mountain scenery.

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One could write a dozen such blog posts highlighting Georgia’s beauty and yet not scratch the surface. It is a complex, sometimes difficult place, and I do know some people who dislike it, but it has a special, indescribable ‘something’. My experience in Georgia was beautiful. It wrapped itself around me like a blanket, got into my DNA, and has certainly captured my heart and mind forever.

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Georgia is a country of contradictions. It felt like a place frozen in time and yet modern and pulsating with life. Beautiful and yet there are pockets of poverty, disheveled homes in dilapidated Cul-de-sac. Georgia is Unique. Culturally limitless. Lots of contrasts. Bohemian. I guess like all places I have traveled to, Georgia has its own special vibe and that’s why I loved it so much. We travel to seek out different places and people. An insatiable thirst for difference.

Like all those who travel, I have seen and experience way more than I remember and though it has been two days since I have returned from my short trip  I’m still there in my head and heart, and the hole it leaves is tangible. I will return there someday but until then, like that old Ray Charles classic,

I’ve got ‘…Georgia on my mind…’

 

 

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Everyday Empathy

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I can recall vividly the day I first read those words. The writer was Harper Lee and the book was ‘To Kill a Mockingbird’. I was lying on my sofa at home reading a book that I would not fully understand till I had read it over, years later. But even through my fogginess, one sentence stood out for me.

“You never really understand another person until you consider things from his point of view – until you climb inside of his skin and walk around in it.”

Fact: Empathy is integral to our lives. And yet, if we’re honest, I think we’re living in a world that makes it so easy to lose sight of another person’s pain. The truth is that people haven’t lost the ability to empathize, but they may have lost sight of the fact that tapping into our emotional core needs to be an everyday occurrence and not something we do selectively.

What does this deficiency do to a person? What has changed in our empathetic wiring? Have we become so distracted that our unseeing eyes aren’t able to really connect with another person?

It dismays me somewhat to see that people’s collective stirrings has the power to move masses on social media resulting in phenomenal movements that can bring about revolutionary change. And yet those very same people can remain aloof and emotionally unavailable in their own human relationships. Such a paradox!

As my fingers circle the rim of my coffee cup this evening I am more convinced that one of the reasons people struggle with empathy is not just because we don’t understand others. I think a huge issue in our present world is that many people still don’t understand themselves. How can one who is unbalanced or conflicted ever be able to really empathize or understand another? How can you love your neighbor if you don’t know how to love yourself?

I wonder. Can empathy be taught? Can empathy be developed?

Compassion is a cornerstone of our emotional quotient, a vital first step towards Empathy. As a teacher I am conscious of my own role in role-modeling empathy and while I am aware that having empathic parents and teachers does not guarantee that children will become empathic, it is certainly an important factor.

I’ve been sitting here marinating in my thoughts. Perhaps unnecessarily. Perhaps not. I am not saying that I believe that people are lacking in empathy today as opposed to in the past. That premise would be wrong. True, people are the same as they ever were but what has changed drastically I believe is our ability to connect and gain deep insight into what other people think, feel and do and therein lies the problem.

In a world that spends billions on professional therapy, I think what we are most in need of is deep introspection. While it is surely not possible to feel connected to 7 billion strangers our only hope for the future is if we can at least exist organically and really feel instinctively for the ones we know and love.  Everyday empathy, that’s what we need. After all – Ubuntu, it is our humanness that connects us all.

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Pamuk’s Museum of Innocence

I’ve only managed to read a measly eight books this year. Just eight. That’s three less than the 11 books I read in 2014. One of the reasons for the slump in my reading statistics is the time I devoted to each of these books. Orhan Pamuk’s ‘The Museum of Innocence’ has taken me the longest – a little over seven weeks to get through 728 pages. The large capital letters of his name have been by my bedside as a constant reminder that I have long neglected the bourgeoisie memoir.

The truth is; the novel didn’t suck me in the way I thought it would. The maestro’s 700 page story of a man’s obsessive love for a younger woman wasn’t exactly riveting. The first half of the story is a classic tale of reckless passion colliding with bourgeois standards. The latter is far more interesting and as the political upheaval begins to rock Istanbul, the book and the protagonist both undergo radicalization and change, as the neurotic kleptomaniac makes his way through the stations of his doomed love affair.

PAMThe love saga of Kemal and Fusan gradually becomes grandiose and unrealistic and makes the narrative a slightly difficult read. I literally forced myself to finish the book but only because I was reading Pamuk and I refused to give up on him.

For me the hero of the book is not the compulsive lover caught between his fiancé and his mistress. The true star of the book is Istanbul and Pamuk masterfully captures the essence and intricacies of the beautiful city as he chronicles the oddly timed love-affair. The novel masterfully captures a panoramic view of life in Istanbul and the identity crisis experienced by its upper classes who find themselves caught between all things traditionally Turkish and on the other hand the westernized way of life they were just getting used to. Istanbul is almost like a character in itself – it mirrors the characters’ own conflict as a city torn and ravaged by political upheaval. The vistas Pamuk paints are like monochrome reminders of conflicted people in complicated situations.

Reading the lavish descritpions of the city, I found myself closing my eyes to re- imagine the biting cold of January 2011 as I stepped out of the Atatürk Airport into the chilled winter air. Minutes later my minivan speeding through the serpentine roads and finally onto the magnificent Bosphorus bridge as the bejeweled skyline came into view alongside. Pamuk’s descriptions of the romantic city are exquisite and a delightful sensory journey not to be read but rather – experienced. I hope to go back to Istanbul some day and I’ve promised myself to read his novel with the same title when I’m there.

Coming back to the novel, it can be read and interpreted in multiple ways. It’s a love story, a political chronicle and a social commentary all rolled into one. At the end of it all, though Kemal does somewhat resemble the emotionally fraught Miss Havisham s the objects Kemal collects and adds to his ‘museum’ seem to pile up in his attempt to compulsively ‘freeze time’ – something that is not all that strange for the average person. There is something to be said for memorabilia, we value little things because they represent a connection with something important in our past. Many of us keep all kinds of memorabilia around and while I don’t believe those things intrinsically represent a threat to your present, they are part and parcel of who you are and what you have experienced.

A few months ago I blogged about my own ‘Cardboard box’ full of keepsakes and mementos that are vital scraps of my life. So much of who I am and what made me this way is confined therein. Kemal found love a little too late – he was an ordinary man placed in some extraordinary circumstances and his museum became his sanctuary. You and I may not obsess over memorabilia the way Kemal does in the novel but we sure do know what it represents and how much we value those memories when the real thing is long gone. Perhaps a book about objects of desire, so to speak, will make more sense to a reader who has had the pleasure (or displeasure) of being in love. Read it, you’ll understand why.

In conclusion, Pamuk’s novel is (if nothing else) a saga to the value of our memories and the place they hold in our lives. Having said that, there is one last thought I cannot shake  – the funny thing about memories is that they only last as long as you remember them, don’t you think?

 

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