Dr. Steven Kopits (1936-2002)
The journey of a thousand miles begins with a single step. -Lao Tzu
There are approximately 200 types of dwarfism with Achondroplasia being the most common. Almost all obviously affect the bone structure, cartilage, and connective tissues.
Eighty percent of us come from families with no history of dwarfism whatsoever, as in my case.
However the jury is still out on exactly which type
The only thing was though, I had just been in the hospital for months while learning to walk again; missed work all that time and gone through what savings I had. I didn't even know yet how I was going
"Steven! Look! Look at her hands! And her feet!"
Dear sweet Dr. McKusick...when he completed his impromptu show and tell had me sit down for a moment in the busy corridor while he went to make some phone calls about my "uniqueness." As he walked away Dr. Kopits rushed over to speak with him.
Afterwards Dr. Kopits came to ME asking if he could take me on as a patient, and would I be willing to wait
He had all my records and could not believe I was able to walk again following the bleed out and hematoma paralysis of my recent spine surgery. With his nurse
Dr. Kopits asked if I could remain in Baltimore for at least four weeks. Financially I told him there was no way I possibly could. He said, "Wait a moment," and made a call.
Where Dr. Kopits was staffed at the hospital in Towson, Maryland, the hospital had a Ronald McDonald kind of house on the property just for the patients and families of Dr. Kopits. He secured a room for me.
Since neither Dr. Kopits, his nurse, or myself had eaten all day he wanted to take us out to eat. Hours earlier I wasn't even his patient...hadn't even met him before and with his nurse I had been asked to join him for dinner! All because I took a step of courage.
The specially designed House I stayed in had low sinks, toilets, bathtubs, etc. just for a Little Person 3' tall. It was amazing. I had to actually get on my knees when at the sink! For the first time in my entire life I felt what it was like to be "tall."
My first Saturday in Baltimore Dr. Kopits unexpectedly came by. Said he realized I would need things in the weeks ahead then took me to a grocery store and bought what I needed! Afterwards when he told me he hadn't ever seen The Preakness horse race which was about to start, I then kindly responded, "NO WAY! What planet have you been living on, Dr. Kopits?!!"
During those four weeks I was seen by many doctors including a renown hematologist, neurosurgeon, and underwent many tests.
He was a dear man...an incredible man, and a very gifted orthopaedic surgeon who deeply cared about all his patients and was beloved by all. Sadly in 2002, after a courageous fight, Dr. Kopits succumbed to a brain tumor.
If I did not have the courage to take that step of a thousand miles to make it to Baltimore I never would have known many things about my medical journey. Most of all I never would have known such an amazing doctor...and a dear friend.
Dr. Kopits, 2001
The journey of a thousand miles actually begins with having the courage TO take that first single step.
There are approximately 200 types of dwarfism with Achondroplasia being the most common. Almost all obviously affect the bone structure, cartilage, and connective tissues.
Eighty percent of us come from families with no history of dwarfism whatsoever, as in my case.
However the jury is still out on exactly which type
of dwarfism I have, though I certainly have some Achondroplasia characteristics. In fact how I met the world renown Dr. Kopits was because I had an appointment to see his colleague, the dear geneticist Dr. McKusick, at Johns-Hopkins.
Though I recovered from the near death bleed out and paralysis during my most recent spine surgery at that time, I was having severe problems with plummeting blood counts. My doctors were hoping if we could nail down which type of dwarfism I have we could possibly solve the blood count issues. Also learn if other Little People had the same problem.
The only thing was though, I had just been in the hospital for months while learning to walk again; missed work all that time and gone through what savings I had. I didn't even know yet how I was going
to GET to Baltimore and stay for one day and two nights.
Yet with a courageous leap of faith I took that single step anyway and made the arrangements needed.
The next day I found a envelope someone put under
my door. An dear anonymous donor provided the
airline ticket and the money to cover the room near Johns-Hopkins.
Dr. Kopits was such an extraordinary doctor for Little People he had a waiting list of one to two years. When I scheduled my appointment for Dr. McKusick, I learned it just happened to be a day Dr. Kopits was at Johns-Hopkins seeing patients. I was hopeful to simply just meet him as I heard so much about him.
I flew to Baltimore and saw Dr. McKusick early the next morning. As soon as Dr. McKusick saw me he became VERY excited. He immediately noticed my hands, feet, and longish extremities. Remember, I hadn't met any other Little People yet to know I was "unique" in this way. Besides being on the "tall" side of dwarfism he pointed out to me how my hands and feet are average size. I can wear regular adult shoes. Many Little People cannot. Sadly many Little People also have such malformed hands and extremities, their lives are far more challenging than mine and my heart aches for them.
Dr. McKusick flipped out when he learned I play the piano, am a artist, and majored in Theatre Scene Design. And then...AND THEN...when he learned I own and ride horses his jaw dropped. At that point he suddenly got up, grabbed my hand and literally began dragging me (I had to go with my hand) for all his colleagues to see. And you guessed it. One of those just happened to be Dr. Kopits.
Dr. Kopits was such an extraordinary doctor for Little People he had a waiting list of one to two years. When I scheduled my appointment for Dr. McKusick, I learned it just happened to be a day Dr. Kopits was at Johns-Hopkins seeing patients. I was hopeful to simply just meet him as I heard so much about him.
I flew to Baltimore and saw Dr. McKusick early the next morning. As soon as Dr. McKusick saw me he became VERY excited. He immediately noticed my hands, feet, and longish extremities. Remember, I hadn't met any other Little People yet to know I was "unique" in this way. Besides being on the "tall" side of dwarfism he pointed out to me how my hands and feet are average size. I can wear regular adult shoes. Many Little People cannot. Sadly many Little People also have such malformed hands and extremities, their lives are far more challenging than mine and my heart aches for them.
Dr. McKusick flipped out when he learned I play the piano, am a artist, and majored in Theatre Scene Design. And then...AND THEN...when he learned I own and ride horses his jaw dropped. At that point he suddenly got up, grabbed my hand and literally began dragging me (I had to go with my hand) for all his colleagues to see. And you guessed it. One of those just happened to be Dr. Kopits.
"Steven! Look! Look at her hands! And her feet!"
Dr. McKusick said. "She plays the piano and she's an artist! And...AND SHE EVEN OWNS AND GALLOPS ON HORSES BAREBACK!"
Before Dr. McKusick dragged me on I managed to blurt
Before Dr. McKusick dragged me on I managed to blurt
out to Dr. Kopits with laughter, "I had hoped to...oops! Gotta go! So happy to get to meet youuu!"
Dear sweet Dr. McKusick...when he completed his impromptu show and tell had me sit down for a moment in the busy corridor while he went to make some phone calls about my "uniqueness." As he walked away Dr. Kopits rushed over to speak with him.
Afterwards Dr. Kopits came to ME asking if he could take me on as a patient, and would I be willing to wait
to see him after he finished with all his other patients. WOW...like I had anywhere ELSE to go?!! "Yes!"
We had this conversation around 9:15 A.M. I was his last patient and finally saw him around 7:30 P.M. One of the first questions he asked was, "Please tell me, HOW do you get ON your horse?!!"
We had this conversation around 9:15 A.M. I was his last patient and finally saw him around 7:30 P.M. One of the first questions he asked was, "Please tell me, HOW do you get ON your horse?!!"
He had all my records and could not believe I was able to walk again following the bleed out and hematoma paralysis of my recent spine surgery. With his nurse
he spent over an hour with me. We also discussed the new spine pain I was experiencing, which turned out to be the two severe spinal cord inflammation diseases.
Dr. Kopits asked if I could remain in Baltimore for at least four weeks. Financially I told him there was no way I possibly could. He said, "Wait a moment," and made a call.
Where Dr. Kopits was staffed at the hospital in Towson, Maryland, the hospital had a Ronald McDonald kind of house on the property just for the patients and families of Dr. Kopits. He secured a room for me.
Since neither Dr. Kopits, his nurse, or myself had eaten all day he wanted to take us out to eat. Hours earlier I wasn't even his patient...hadn't even met him before and with his nurse I had been asked to join him for dinner! All because I took a step of courage.
The specially designed House I stayed in had low sinks, toilets, bathtubs, etc. just for a Little Person 3' tall. It was amazing. I had to actually get on my knees when at the sink! For the first time in my entire life I felt what it was like to be "tall."
My first Saturday in Baltimore Dr. Kopits unexpectedly came by. Said he realized I would need things in the weeks ahead then took me to a grocery store and bought what I needed! Afterwards when he told me he hadn't ever seen The Preakness horse race which was about to start, I then kindly responded, "NO WAY! What planet have you been living on, Dr. Kopits?!!"
So for the first time in his life in his own city, Dr. Kopits
sat down and watched The Preakness with his horse crazy patient. However my efforts to forever convert the man to horses never took off though, but I really did give it my all through the years.🤣
During those four weeks I was seen by many doctors including a renown hematologist, neurosurgeon, and underwent many tests.
One in particular not only revealed the inflammation diseases but the severity of them. They were all quite astounded by just how severe things were. Said they had never seen anything as terrible. Yet were further astounded by the ways I continued to press on grabbing life with my faith, enthusiasm, positivity, my friends, and my horses.
My blood counts were way out of control necessitating more transfusions while I was there. This is when Dr. Kopits asked if I could move to Maryland. There was no doubt my physical future would be a very daunting one at the very least and it grieved him terribly.
He was a dear man...an incredible man, and a very gifted orthopaedic surgeon who deeply cared about all his patients and was beloved by all. Sadly in 2002, after a courageous fight, Dr. Kopits succumbed to a brain tumor.
If I did not have the courage to take that step of a thousand miles to make it to Baltimore I never would have known many things about my medical journey. Most of all I never would have known such an amazing doctor...and a dear friend.
Embrace courage my dear ones, to take that single step
for you just never know what wonders can unfold in your journey whenever you do.🐎💫
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