The miracle of Jojo

When my kids were 5 and 7, we bought them a dog. They named him Jojo, after the oldest son in the movie Horton Hears a Who. Jojo, although the oldest son, was the smallest in the family. He was little and seemed like he felt insignificant and misunderstood. Jojo however turns out to be the unexpected hero of the story, the one who along with the mayor, helps Horton to save the day. 

When Jojo came to stay with us, he was 5 months old. He cried the first night that he was with us. His bed was in the living room, but he wouldn't sleep in it. I slept on the floor in our living room with him that night - he crawled into my lap and into my heart. 

We got Jojo the same week that my grandmother passed away. The school year had just begun and we decided that I should go alone to South Africa to be with my family for the funeral. I told my kids that if they missed me while I was gone, that they could remember that Jojo, being littler than them, also probably missed his mother and that instead of feeling sad, that they should comfort him instead. In those 10 days that I was gone, Jojo cemented his place permanently in their hearts.

Jojo fit perfectly into our family. He would climb onto the couch for our story time cuddles before bed every night. He knew when I would get the book, and would take his place on the couch ready for that night's story. He loved to cuddle and hated to be alone, very much like our son Daniel. He also had a very naughty streak, and he could outrun every runner in our family - Jojo cared not for all the running medals or races that any of us had won, he could outrun and out dodge all of us, and it was his favorite game that he played every time someone accidentally left our front gate open, leaving us trailing behind him into some stranger's house in our housing complex profusely apologizing for our mischievous dog. Even when Jojo chewed up our daughter Naomi's favorite stuffed penguin, she was angry for a short while, but she still loved Jojo with all of her heart. Jojo belongs to our family, and we belong to him

And then in September 2015, a little over a year later, I suddenly fell terribly ill and had to be admitted to the hospital. I don't know what Jojo must have thought when I disappeared from the house and my family spent days and weeks going back and forth from the hospital. The doctors finally figured out what was wrong with me, but I was already in the ICU on a ventilator. I spent 5 days on the ventilator and when they were able to take me off of it and I was strong enough to breath with just oxygen as support, the doctor briefed me on my treatment going forward. We had a lot of questions for her, and one of them was, could we keep Jojo? 

The doctor strongly recommended that we not have animals in the house when I returned home for fear that my compromised immune system would pick up an infection or a possible parasite. With a heavy heart, my husband tried as best he could to find a friend or family member nearby that would be able to take Jojo until we could bring him home again. But try as he might, nobody was able to take Jojo and he had to make the difficult decision to try and sell Jojo before I was allowed to come home from the hospital. He sold Jojo to a dog farm, and then as a family we focused all of our energy on my healing.

There was many a night after story time that there were tears about Jojo. For 2 a half years, my kids missed him terribly. They had a Jojo shaped hole in their hearts, and there was nothing they could do that would make it go away. Every Christmas and birthday, Jojo was on the top of their wish-list, and sometimes, he was the only thing on their list. The worst part about it was that we couldn't even take them to see Jojo as my husband had lost his phone and along with it the phone number of the new owners. Try as we might, google searches and numerous phone calls to dog farms in the area where he should have been, we could not find Jojo.

Then one day a friend of ours suggested that Daniel go on a local TV talent show

 to show off his soccer goalkeeping skills. The show tries to show off children's skills or special talents and in exchange tries to help a dream of theirs come true. Daniel's dream? He wanted to see Jojo again. Daniel did a great job and when the show aired, the new owners happened to be watching. They were touched by Daniel's story and contacted the show saying that they wanted Daniel and Jojo to meet again.

We were reunited with Jojo at the dog farm about a month ago. It was a beautiful moment for all of us, and my kids haven't been the same since. It's like the hole that was in their hearts for the past 2 and a half years finally found it's missing piece again. The owners kindly offered for us to to have Jojo back, at no charge. And although my doctor said not yet, we have found a very special family friend that loves dogs that has taken Jojo in until we can bring him home again. Jojo now lives 10 minutes away from us, and we can visit him whenever we like.

The story of Jojo to us is a miracle. To my kids it's a miracle that we were able to find him again and that was an answer to 2 and a half years of their prayers, but to me, the miracle is more that us as people are able to form such bonds, and that others, whether it be pets or people, can become parts of the puzzle of our hearts that nobody else can fill. Jojo is a part of us. His story and ours are intertwined. 

Jojo is our unexpected hero who saved the day, and we are his family.

 

Never give up

When I was in the ICU, a woman the same age as me was admitted to the bed next to me. She also had an auto-immune disease, but when she came in, she was still breathing on her own, while I was already on a respirator. I remember wanting to be able to talk to her, but not being able to because of all the tubes and machines. She was eventually put on a respirator too and given the same treatment as me, but while I improved every day, her body did not respond well to the treatment. Her husband sat outside the ICU, just like mine, wondering every day if we would make it. I distinctly recall her panicking when the nurse would try to sedate her to help her to rest so that her body would respond to the treatment. It's amazing how strong the mind can be that our fears can overcome even the strongest of drugs. She refused to sleep, terrified that she would stop breathing. I knew that no matter what, I had to remain as calm as possible if I were to make it. I signalled the nurses each time my respirator would need to get suctioned so that I could breath easier. I counted each breath when they took me off the respirator, because after five days, I was afraid that my body would not breath on it's own.

When my respirator was removed I was unable to talk, but if I could have, I would have told the woman in the bed next to me not to give up. To keep on fighting. That life is worth living, and that no matter what, the pain would eventually pass. I was moved out of the ICU the following day, and when I was in my room receiving my first chemotherapy I heard that she had died.

Almost two a half years later, I sit here on my couch writing this as a drink a cup of tea. I'm not going to lie and say that the fear that I will stop breathing hasn't plagued me since I was taken off that respirator. It is always there, in the back of my mind. There have been days when my breathing is particularly bad and I have to consciously choose my actions just so that I can make it to the end of the day without being completely exhausted. On days like that, flights of stairs are my worst enemy and reading a book to my children while having to take deep breaths in the middle of sentences is more frustrating than I can even explain. But what is greater than the fear that I will stop breathing is the fear that because of it, I will stop really living.

You see, I made it out of that ICU, and the woman in the bed next to me didn't. One lived and one died. I was given another chance, and while my body is not what it once was, I know that the way that I choose to live now speaks volumes to the people around me. When I started teaching again my doctor wasn't very happy about my decision. She viewed me as her patient, and she cares for the physical well being of all of her patients. Being severely immune suppressed and deliberately putting myself into an environment like a school meant that I was knowingly putting myself at risk of infection - I knew that, and I understood why my doctor was unhappy with my decision. After the first few months of teaching, I had seen my doctor so many times for infections and viruses that I had picked up that she casually said that she wished I would stop working so that I could get better. I told her that staying at home for the rest of my life so that I don't get sick is not really living, but that if she thought that was the only way that I would get better, I would take her advice and put in my resignation.

A week later at my follow up appointment, my doctor seemed to have changed the way that she saw me. I was no longer just being treated as one of her patients that she wanted to keep alive at all costs, but as the patient that wanted to truly live, without fear of dying. She has always been an exceptional doctor, but that day, I saw something change in the way that she spoke to me. She is now my cheerleader. When the frustrations of the side effects of the drugs get too much, she tells me what I would have loved to say to that woman that day in the ICU: 'don't give up'.

In just six weeks time, my twelfth grade students will graduate from high school. It has been a difficult year for me, but the opportunity and privilege to speak into their lives is one that I will never be able to measure. I have seen students begin believing in themselves for the first time in a long time. I have seen them change the way that they see the world, but most importantly, the way in which they see themselves. If I can leave them with one message that they will take with them, I hope that it is this:

Never give up on yourselves - no matter what. You can make a difference, but you have to choose to. Do not be afraid to live your life - life will be hard sometimes, but you must choose to live it.  

The 12th of September

On the 12th of September 2003, I arrived in Thailand. It was pouring with rain the day I arrived. Monsoon rain, the type I had only ever heard about but never experienced firsthand. It poured for days on end that first week. When the heavens open in Bangkok and the rain comes, life comes to somewhat of a standstill, as one can hardly go anywhere without getting soaked unless you are driving from one covered parking garage to another. Once the rains have stopped, the roads are often flooded and the dirty rainwater mixed with the filthy black drain water becomes the humidity that you feel and smell and wear on your skin until the next rainfall comes to wash it all away again.

On the 12th of September 2015, I was lying in the ICU of a government hospital in Thailand. Unable to breathe on my own, I was on a respirator. The monsoon rains were again falling. I could hear them, and see the rain falling through the tiny window that was just at the right angle for me to peer out of. The rain seemed to be taunting me - being on a respirator, I could not drink anything, but the thirst from not having any water for so long was almost unbearable. As I watched the rain out of that small window, not being able to communicate with anyone, I thought about the thirteen years that I had spent in Thailand, and how life can change so suddenly, but yet the seasons remain the same.

Today is the 12th of September 2017. I have been in Thailand for 15 years. Ironically, the sun is shining today. The monsoon rains have not shown their face for a change, and perhaps it is a sign of encouragement - that despite the certainty of the seasons, one can never truly know what the 12th of September, or any day for that matter, will bring. It is neither the beginning of a new chapter of my life, nor is there a major twist in the plot as there was two years ago. I am neither healthy, nor would I really call myself sick - although I suppose once you have had to use a machine to breath your standards of what healthy is do change to a certain degree. In the past two years I have fought to achieve remission, but much more so, I have fought to find out what it means to live life. I am not in remission, but still, I am very much alive. Over the past three months, I have had the chicken pox, bronchitus, been hospitalised with a serious sinus infection and been on five different antibiotics and various other medications - none of which have touched the bacterial infection that my immune suppressed body has been trying to fight off. My disease is again suspected to be active, and my medication will be changed to a stronger one to try and put the disease into remission. Neither I nor the doctors know if the treatment will be effective. It's pretty much a guessing game on all sides. Yet, each day, I wake up and think 'I'm still alive.' 

You see, living, is something that although we do each day, many of us don't really think that much about. How many more 12th of September's will I get? I have no idea - but I hope that it is many. Many more monsoons and many more surprising sunny September days. I have come to realise that really living life for me means being present, no matter the season - no matter the torrential rain that taunts us with promises of refreshment that never seem to come, or the cycles of life that seem like the smelly, dirty humidity that sticks to us and leaves us no respite. Those are but the challenges of life that urge us on to the sunny days, to not give up hope for the knowledge that they will come, even if they are but sunny moments and not whole days or seasons at a time. It means loving those that are with me today, for who knows if there will be a tomorrow. It means intentionally doing and saying things - looking my children in the eyes and telling them I believe in them, every chance that I get. Taking a little extra time to look at the sunset, and listening especially carefully to the birds in the trees. It means taking the time to encourage others at every opportunity - for although my battle is tough, I have come to realise through my struggles that we are all fighting some kind of a battle and each of us needs someone to help us to know that now is not the time to give up. 

Live intentionally. Love intentionally. Encourage others intentionally. Be the sunny moment in someone's monsoon rain. Wake up each day and remind yourself, that no matter the challenges that life may bring, today, you are alive, and while you are alive, there is hope. 

The Medical Power Shift

Modern medicine is truly a miracle and the fact that I am even alive is a testament to that. It is astounding the things that they can do with the medicine and the modern medical machines that are available. People, who today are diagnosed with diseases that could have meant a death sentence just half a century ago, are now given the opportunity to see their children and maybe even their grandchildren grow up and flourish. What amazes me even more is the young and nimble minds of the new doctors, who are armed with technology and are not afraid to use it. The world is changing, and these are the doctors who are going to change the face of the medical world.

 I marvel that even though almost every doctor I meet looks at me like a ghost from one of their med school books - having Granulomatosis with Polyangiitis (GPA) is something many of them read about, but since practicing have rarely, if ever, seen in real life - yet, the modern medical world gives them access to the information that they need in order to treat me. The miracle of modern medicine goes beyond borders with information now freely shared all over the internet. The biggest miracle is not the machines, or the drugs, but rather the ability of any doctor anywhere in the world to access information about a similar case even without ever having seen one in real life. 

When my rheumatologist came into the ICU to talk to me, my parents and my husband about my initial diagnosis, she came armed with her iPad and pulled up files from the Vasculitis foundation in the UK. She answered questions, that would make many doctors cringe, with ease as she pulled up the information right there in front of us from the internet. She is a remarkable lady but she is currently on leave and there isn't another rheumatologist within 100kms from us. I recently was examined by a doctor of another speciality who had to make the use of a medical camera as a diagnostic tool. When the new doctor found something she was concerned about, she took my phone and recorded the video from her computer screen for me to keep in case I needed to urgently travel to see another rheumatologist before mine came back from leave. She then sent the video in a message from her phone to my rheumatologist who was on leave. I sat there dumbfounded. The fact that they can see inside my body with advanced medical cameras is amazing enough. The fact that the piece of apparatus that really saved the day on this occasion was a simple iPhone camera is quite another. The big expensive piece of equipment in the hospital was necessary, but the fact that the doctor was young and smart enough to understand the power of the phones in my pocket and hers in getting the information to where it needed to be was just mind blowing.  

Since being diagnosed in 2015 I have also discovered that the power of social media in assisting patients and their families is phenomenal. When you live in a corner of the world where your doctor has never even met someone who has the same disease as you, it is hard to imagine that you would ever be able to share your struggles with anyone in real life. To be able to connect with hundreds of patients at the same time who have gone through or are going through the same struggles has increased the value of social media for me one hundred fold. Shared struggles seem much lighter, and being able to talk to people who are actually going through what you are going through, as opposed to only medical professionals who have only ever read about what you are going through is something that holds an enormous amount of value for patients with rare diseases like mine. The doctor who took the video with my iPhone explained my options to me, but was surprised that I knew much more about the procedures that she was talking about than the average patient due to the information that I have been able to gather from patients with similar conditions. It may not be everyones cup of tea, but I have even watched a similar procedure being performed on Youtube to better inform myself in case I have to have the procedure that they are recommending. The information is out there, and it is now up to patients and doctors to work together using wisdom and mutual respect - patients after all are not qualified doctors and should respect the imperative role that their doctors play in taking care of them, but the doctors must also accept that in many cases the patient is no longer uninformed, and now plays a much more active role in their own care than they ever did before.

The internet is shifting the power of the medical world. With more young doctors open to using technology and more informed patients, who knows what it will look like in the years to come. The shift is understandably difficult for many doctors. It must be incredibly frustrating to have patients coming in declaring that they have some disease that they have found on Google, without any genuine medical basis for their self-diagnosis, disregarding years of medical school and medical experience and insisting to prefer Dr. Google. But in the cases of patients that genuinely do have diseases that doctors have rarely seen, the shift is welcome, and the faster that it happens the better. The medical world is no longer a place that is accessible only to those who study to be doctors. Our world is changing and as much excitement as the enormous medical discoveries of the future are going to bring, perhaps the wonder of the shift is that sometimes the solution is as simple as the iPhone in your pocket, or the iPad on your doctors desk, and the source of information that you may really need is a group of patients from all walks of life that have the same disease and a Facebook page in common.

The Sleeping Giant

I was diagnosed with GPA almost 9 months ago. At the beginning of this past month, my doctor wrote the word  in my medical file that every GPA patient wants to see : 'Remission'. It has been a long and exhausting journey to see that one word. The drugs, the side effects, the complete and utter exhaustion, scopes, scans, uncountable x-rays and blood tests and the challenges of living every day with a compromised immune system have made for a unique journey, the kind that I never thought would be mine.

I have never been the kind of person that lives in half measures, and it is exhausting to have to constantly remind myself to slow down. Truly I am only on the road to what is medically considered real remission, which would mean that I would have to be symptom free, and be off all of the drugs that I am currently on. However, knowing that I am on the way there helps me to have hope, and to force myself to stop and rest, when before having GPA I would have pushed myself to carry on going.

Each day that I am able to get out and run, I have hope. It feels like life again, albeit slightly slower than before. I run for those who cannot, and for the years that perhaps I may not be able to, because I  had honestly taken the simple joys of life for granted before and now I am reminded every day that forever may not be as long as we think. I may never win another race, but I will certainly try.

I realise that the battle that I fight has a name, and I am thankful that I know it's name, and that although doctors don't know what causes it, nor is there a cure for it, at least I know what I am fighting. It is now sleeping, with the help of the drugs and the many prayers, and by the grace of God. However, many people that struggle with an autoimmune disease struggle for years to get a diagnosis. The disease can be put to sleep (remission) for a time for many people, but for many the damage that is done on the long road to diagnosis is unrepairable. My GPA moved fast, and violently, and although I nearly died, I am thankful that it presented itself the way that it did, because it forced the doctors to keep looking desperately for a diagnosis.

And while I continue to walk this unsteady road to drug free remission over the coming months, I dare not live my life loudly, but have quite enjoyed the process of learning to live slowly for the first time. A life in which I really see and hear many things for the first time -it is truly a gift that not all of us are given. To have something that forces us to realise that our tomorrows may be numbered, and to make the best of each and every one of them - a gift, wrapped in a rather unlikely disguise. There are many days that I would like to exchange my gift, but I have also come to realise that everyone is fighting a battle - and perhaps I overlooked the struggles of those around me before I really had any genuine struggles of my own.  To have one's own struggles in order to really see the struggles of others, and to live in human brokenness in some form or another so that that you can truly understand and appreciate the hardships that some people have to encounter - that is the gift that leads you to the road to true empathy.

So here's to remission - to the putting to sleep of the giant that is GPA. May he never rouse again - but if he does, I sure am glad that I know his name, and am armed with a doctor who has a good idea how to fight him to sleep again.


Sleeping Giant

There's a sleeping giant inside me
I dare not to rouse him
Life is a tiptoe, a quiet dance around him.

There's a sleeping giant inside me
Sometimes he stirs
But yet, he doesn't wake, and I am free again.

Free to wonder when or if the giant will ever wake.
Will he ever show his head again,
Or will his slumber leave me in peace?

Life is for living they said.
The warning is clear
Don't live too loudly, or the giant may wake.

I have only met my giant once.
He tried to kill me.
I know his name now, and fought him to sleep.

Nobody knows where he came from or why.
But now he is a part of me.
Sleeping quietly for now, hopefully never to wake again.

Life is for living they said.
Who knows how much time you have?
You cannot be afraid of the giant - you must live.

But here I am tiptoeing around him.
Playing gently so that I can still play.
My soul shouts 'live', but my spirit whispers 'quietly'.

Live quietly. Not in fear of the unknown.
For I know his name. He is known, and I do not fear him.
But if I live quietly, I know I can live.

Living quietly, laughing loudly.
Slowly. Listening. Looking. Really seeing for the first time.
The giant gave me this.

He tried to kill me.
But also, he gave me life.
Quiet life. Real life. Treasured moments that could be my last.

For the gift that he gave me,
To treasure each moment
I will be thankful, even if we never meet again.

Oh sleeping giant.
Thank you for your gift.
Now, sleep, sleep deeply. Do not rouse. Let me live the quiet life.

Life is worth living

Life is something that I once lived at a million miles an hour.  As I ran through each day attempting to complete as many tasks as possible in the 24 hours that I was given, I hardly ever saw the flowers, let alone stopped to smell them. And they were there of course, the flowers, in the morning with dew drops sparkling in the sun, attempting to grasp my attention that I would stop the mad rush that was my life and take in their beauty, if only for a minute. The birds were in the trees, softly chirping each day, waiting to lift my spirit, to say good morning, but yet my mind was so rushed with the details of the day that I did not hear them. The rain that falls daily for months in Thailand was but an annoyance, a hindrance to the things that needed to be done, rather than a refreshing break from the rat race. It should have been a reminder that life is not about how much we can accomplish in the shortest amount of time, but rather a journey that we continue every day - one with birds and flowers and refreshing rainfall that are waiting to speak to our souls. 

In the rush we do not see, we do not smell, we do not comprehend the beauty of the world around us – the beauty that whispers to our soul. True beauty does not shout, it whispers to our soul, and to hear it our soul must stop and be still. The rain may bring the rainbow, but we will not hear the promises that it has for us if we do not go outside to see it. Not just to look at it, but to truly see its beauty: the kind that cannot be captured by a photograph, the kind that cannot be shared online. The kind of beauty that is whispered by a rainbow and a sunset must be experienced by one’s soul – and we cannot do that from behind the screens of our computers, or with our minds full of to-do lists. We cannot appreciate the beauty of life from the traffic jams of the highways of busyness. Sometimes, we must be forced to stop so that we don’t trample on the roses that have been placed there for us to smell.

The question when we discover this secret, the secret of the whispering that does not shout loud enough to drown out the playlist that we have playing on our headphones, is once we discover that the roses are there, once we have stopped to smell them, and seen the beauty of the sunlight reflecting off of the morning dew, how do we reprogram ourselves so that we live our lives to become constantly aware of the whispering, rather than being rescued occasionally from the rat-race by it? How do we teach our children that life is for living, for setting our souls on fire with the hidden beauty that has been created especially for each one of us to experience? How do we show them in this age of eyes constantly on smartphones, that sometimes the beauty that someone else needs is as simple as a smile from a stranger on their commute home from a difficult day in the office? That in fact, they are the beauty that someone else may need at this very moment. How do we help them to understand that the life that we live on social media is not in fact real life, and that real life is the one that we experience with our senses? Real life is the one where the beauty that God has created for us makes us feel free, despite all of the expectations that others have of us, or in fact that we have for ourselves.

These revelations do not come cheaply. For some of us, we must be forced to stop and look. For me, stopping did not come voluntarily. A near death experience, a rare disease diagnosis, a month long hospital stay – a much needed reality check for someone who thought they were already living life to the full. Six months later, it is the difficult days, the ones that I can barely get out of bed that bless me the most. It is those days when I can hear and see and smell and touch the beauty that God has for me the most. On the days that I am strong, which are increasingly frequent these days, I am tempted to forget the lessons that I have learnt through the struggle. I put in my earphones with my playlist and work through my to-do list. I forget to listen for the birds in the morning and run to finish my workout and carry on my day rather than to see the morning sun on the wildflowers and rice fields. It is on my weak days, the ones where I take a slow walk with my daughter to the park to hear her laugh as I push her on the swing, that I am reminded that fast is not always better. More is often less. Strong, in fact, is my weakness.

So the question, how can I teach my children the lessons that I have learnt, and how do I continue to walk in them as I get stronger? It is a journey, but it must be lived. It must be modelled. It is not something that can be taught, it must be seen, experienced.  We must discover it for ourselves, and we must determine not to lose the insight that we gain. And, when we do lose sight of life’s beauty, which we inevitably will at times, we must learn to quiet our souls and hear life’s beauty whispering to us through the quiet still breeze across the ocean. Life is worth living. Life is worth living and it is beautiful- but it will not shout to get our attention. The whispers are everywhere if only we will stop for long enough to listen to them. 
                                

International Rare Diseases Day

In my almost 8 years of being a parent, I have always been pretty relaxed about childhood illnesses and injuries. Sniffles and stomachaches and chicken pox are all a part of being a kid. Most kids get at least one set of stitches at some point, and maybe a broken limb or some torn ligaments. My most recent trip to the Emergency Room involved my daughter having to have her tongue stitched up after she went down the slide at the playground a little too fast and bit her tongue as she reached the bottom. My kids are accident prone, but also pretty brave. The doctor wanted to put my daughter under general anesthetic to stitch her tongue but she was having none of it and was sure she could lie still while he stitched it up for her in the ER. She was right, she sat still, got stitched up and was still able to be Snow White in her schools kindergarten production the following week.

Both of my kids are pretty similar when it comes to these things and I was the same as a kid. I tore the ligaments in my ankle in primary school trying to prove to myself that I could jump down an entire flight of stairs. I was on crutches for a couple of weeks, but I remember being pretty proud of myself that I had made it all the way to the bottom step from the top. My sons soccer coach tells me that he has the ideal personality to be a goalie because he doesn't think about getting hurt and just throws himself around the goal without much consideration of what could happen to him. 

However, in September when I discovered that I have Granulomatosis with polyangiitis (GPA), every childhood sniffle and ache was suddenly not just a sniffle or an ache. I am so thankful that I only developed GPA as an adult but I have seen children as young as my own receiving chemotherapy at the same time as me for similar diseases to mine. I cannot imagine what it must be like as an 8 year old to have to live through what I am living through. As a mom, I take every complaint seriously now. I know that not everything is serious and that most things will never develop into much more than a sniffle, but now that my eyes have been opened to the world of rare diseases I can't help but collect every health complaint that my kids have somewhere in my memory in case one day it is a piece of information that could save their lives. 

The 29th of February 2016 is International Rare Diseases Day. If you had told me that a year ago it wouldn't have meant much to me. I'm pretty sure I couldn't even have named one rare disease. There are over 6,000 rare diseases that are known about, and many of them affect young children. Rare diseases need very special doctors - not doctors that think they are knowledgeable, but doctors that are willing to say 'I don't know'. I had a very special team of doctors that helped with my diagnosis, and one of the reasons why I was diagnosed in time was because many of them, highly qualified and experienced specialists in their own field had to say day after day, 'I don't know'. They were humble and willing to admit that they didn't know what was wrong with me and couldn't treat me, but referred me on to someone else who could. My rheumatologist is the doctor that diagnosed me, and I am the only patient that she has ever met with GPA. I list my symptoms for her every time I see her and together we have to try and figure out whether they are related to my disease or not. When she started treating me, she brought her iPad into the ICU and explained the course of treatment by showing my family and I articles from the Vasculitis foundation in the UK. I am a case study of the resident pulmonologist and another one of the doctors who is currently studying to complete his specialization in rheumatology. 

Do you know someone with a rare disease? Do you have a healthy child that, like my two children, doesn't have to worry much about sniffles and chicken pox because they are just a normal part of childhood? This 29th of February, why not participate in helping to raise awareness in some small way? Rare Diseases South Africa runs a project called the 'rare bear project'. You can purchase a bear for a child who has a rare disease in South Africa and it will get delivered to them. So even if you don't personally know someone with a rare disease you can touch the life of a child who may be fighting a very difficult fight.

In South Africa you can have your school participate in the coloring contest to support rare diseases. Find out how you can get involved in your community to help raise awareness -http://www.rarediseaseday.org/.

Do you know someone that aspires to be a doctor one day? Encourage them to be the kind of doctor that is willing to say, 'I don't know but lets find out together'. We could all use more doctors like mine in the medical field - one day you too may need a special doctor to stand by your side and learn together with you.

To all the kids with rare diseases who aspire to be Snow Whites and soccer goalies but can't because of the limits of their disease - never give up dreaming, and may you too find your special doctor who believes in you and fights your disease together with you. And to the parents - be brave and never give up hope.