**Start with Part I HERE.
The first two years after my brother Lance, and his wife Janelle brought their adopted baby Micah home from Hawaii were very sweet. They took another trip to Hawaii to make the adoption official, and then simply enjoyed being a family of four. Micah was slow to develop, but they had expected that since he was born six weeks prematurely. Crawling very late, and showing no motivation to stand up might just be part of the normal development of a premature baby. However, by the time Micah was nearing two-years-old, Lance and Janelle began to worry that there might be something more serious going on. They began talking to Doctors about their concerns.
Though I wish I could forget it, I clearly recall a time that I was with my brother’s family when Micah was about two years old. We were talking about Micah’s delays, and something I had learned about in Physical Therapy School was suddenly right before my eyes…
It was something that I learned about in a Pediatric PT class. I will never forget the day that my Professor got down on the floor, and demonstrated something called the “Gowers Manuever.” He put his legs in a wide stance, and used his arms to push him off the floor and then walk his hands up his legs to stand up. He explained that if a child got up this way, it was a clear indicator of weak core muscles, and it was almost always a sign of Muscular Dystrophy. A healthy child would never get up this way. That teacher’s demonstration really struck me, and I remember thinking How horrible it would be to see this–And Now that I know about it–what would I do if I saw a child doing this?
Well, fast forward a few years, and there I sat at my brother’s house, and right in front of my very eyes I watched as my nephew pushed to standing…legs wide…hands walking slowly, carefully up his legs. And I felt sick to my stomach.
I didn’t know what to say, and I wanted with all of my heart to doubt what was going through my head.
I told Lance that the way Micah stood up was concerning, and that he needed to make sure to tell the doctors about that. I am sure that the doctors were already looking in to MD as well as other possible diagnosis, but that was one moment that I will never forget. It still makes me shudder.
Doctors began a series of tests on Micah, and and Lance and Janelle began a season of waiting. A few months, and many tests later, the results came back daunting: Micah had Duchenne Muscular Dystrophy–the most severe form of Muscular Dystrophy.
The dark cloud of doubt and fear that had hung over Lance and Janelle, now rained down on them in a harsh reality. Their son had an incurable, devastating genetic disease.
Duchenne Muscular Dystrophy causes a progressive loss of strength in muscles, beginning with the skeletal muscles, and observable in weakness in the core. This is caused by a mutation in the gene that encodes for dystrophin. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. DMD affects only boys, although girls can be carriers of the gene that causes the disease. (They found out later that Micah’s birth mother was indeed a carrier, but no one had known that before.)
(To learn much more about DMD, as well as to keep up on current research, and so on, you can refer to the EndDuchenne web site.)
Some kids with DMD show cognitive delays and struggle socially and emotionally. Micah began to show signs of such delays at a young age. This presents its own challenges, however, it also means that Micah doesn’t fully understand his own health issues. This is in some ways a blessing.
Everything about Lance and Janelle’s life changed overnight. They went through every stage of grief in those first months and even years after the diagnosis. They held on to their confidence that God had not abandoned them, and in time, acceptance began to fill in where the pain had resided. Eventually, Lance and Janelle poured their energies into learning about the disease that was their new reality. They wanted to know everything: From what to expect, to how to prepare…From what kind of research had been done, to what trial research was on the horizon. They were open to any and everything, and they began to lay down their life for their precious son who faced an unimaginable road ahead.
Lance and Janelle began focusing much of their energies into fundraising efforts. Their community has rallied around them and they have together raised hundreds of thousands of dollars to put into DMD research. Their family has flown all over the country to see experts, to join trial studies, and to knock on every door that might open to new possibilities before it is too late.
Micah is now eleven years old. As of last year, Micah is in a wheel chair full-time. His parents have remodeled much of their home so that he can wheel around, and the medical costs they face each month are outrageous. He sees therapists and specialists, and though he doesn’t fully understand what is going on with his disease process, he is known to say “I can’t go fast, Mommy?” and “My body hurts me, right Dad?” He still has good moments; he plays and laughs, and enjoys the blessings he has in life, but everything he does requires effort, and often causes pain.
My brother Lance is now on the National Board for Parent Project Muscular Dystrophy, and Lance, Janelle and both of my parents spend time each year in Washington DC lobbying for more funding for research to be done for DMD…They are not giving up hope that one day there will be better treatments, and even a cure for this horrible disease.
Meanwhile, Lance and Janelle are the most incredibly loving parents you could imagine. My brother, who I once thought to be one of the most impatient people in the world, (maybe all little sisters feel this way?) somehow transforms into the most patient person I’ve seen when it comes to his little boy. Janelle is an angel of a mother–always ready with a hug, and full of smiles and warmth every single day. And Micah’s big brother Brayden is the sweetest, most compassionate kid I have ever known. God clearly placed this family together perfectly.
Lance has been participating in a number of running races and triathlons over the past couple of years. He set his sights on the Disneyworld Marathon next January as a way to do more fundraising and run with the team representing DMD. This brings us to my original story, and the fact that some tickets were available to also join the DMD team for the New York City Marathon. Lance and I both decided to do the race with only seven weeks to prepare, but we will run (and maybe walk a little) with PRIDE as we represent every child and family affected by Duchenne Muscular Dystrophy.
Since I feel connected to Micah from before his birth, I only wish there was more I could do as his Aunty to help support him through these years. I am happy to consider this marathon one of the small ways I can RUN FOR MICAH and spread a little Aloha from his birthplace, to New York, and beyond.
I hope you will visit the EndDuchenne site, and consider supporting the fundraising efforts in one way or another. (If you would like to donate specifically to my marathon fundraising, please use a contact form to let me know.)
Then go hug your kids, and thank God for today. Family and relationships are the most important thing in the world.
With Much Aloha,
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