Together, We Walk Farther – My Hero’s Story

My daughter Noa was diagnosed with congenital muscular dystrophy (CMD) at the age of four. CMD manifests in overall muscle weakness with possible intellectual and other disabilities, present at birth. Currently, there is no cure.  She is now six years old, but she is developing much slower than the average children her age. She is a happy, compassionate, and warmhearted girl despite her delayed mental and physical development. To many strangers, her movements may seem a little odd; to her friends, it may take her a little longer to catch up; to me and my wife, Noa is our brightest shining star, the source of our happiness, and our daily motivation.

(Noa)

This Sunday, March 23, marks a special occasion – not only to my family and myself, but also to everyone suffering from MDA and everyone who knows a beloved someone with a muscle disease. It will be a remarkable and monumental day. In this post, I would to like share my daughter Noa’s story with all of you – if it weren’t for all the societal support, resources, and love we have been receiving for years, we wouldn’t be here today.  I am honored to be here telling my story to those of you who are willing to listen. Together, we walk farther.

To learn more about the types of muscle diseases here.

Noa’s Story

According to MDA.org: “CMD results in overall muscle weakness with possible joint stiffness or looseness. Depending on the type, CMD may involve spinal curvature, respiratory insufficiency, intellectual disabilities, learning disabilities, eye defects or seizures.” There are many types of CMD and the symptoms vary from case to case. Most people are not familiar with this condition. In Noa’s case, she looks like a perfectly healthy child from the outside, whereas some less fortunate kids with CMD can not walk at all. Others have mild learning disabilities.

In the beginning, we were frustrated and confused with the uncertainty until we received a diagnosis indicating that Noa has an incurable form of muscular dystrophy, CMD. Just like any other parent upon hearing the worst news of all, we went through anger, desperation, and hopelessness. There were bad times, where we asked ourselves: how can anyone face the reality of a condition that has no cure and is almost undefeatable? We demanded answers and options during the most turbulent times that were full of despair and fear. The disorder affects her muscles, and it exacerbates as she grows. Children her age can already see that she is different. She cannot talk like a six-year-old or act like one. Often times, Noa is left alone on the playground, which saddens the people who love her the most.

The bigger she gets and the more weight she gains, the more difficult it will be for her muscles to carry her body. Even though Noa is able to walk right now, we are frightened by the thought of her eventually needing a wheelchair. But we never ever gave up, and we never will. We will do everything we can to make sure Noa has the life she deserves. We now believe the physical imperfections my daughter displays are obstacles to test how indestructible the human mind is, and how our love for her can be transformed into the muscles she needs to function.

The Impact of the Muscular Dystrophy Association

Being a part of the MDA family helps us cope with the situation better, along with the information and support groups we have access to. That is why the annual walk is such a meaningful event for us, to not only share our story to raise awareness, but also volunteer to encourage others and give back to the community with what we can. It is how we manage to stay hopeful in a seemingly devastating situation.

(Our team at The Muscle Walk 2013, all wearing Noa’s Explorers t-shirts.)

We decided to support the Muscular Dystrophy Association by joining the annual walk to show support for our little girl. We formed Noa’s Explorer and rallied up our human resources to participate in the largest walking event of its kind to honor anyone suffering from any type of muscle diseases. More significantly, the walk and the establishment of our donation site raise funds to help the non-profit association foster research programs and accelerate progression toward the today where we welcome a greater understanding of these diseases, treatment strategies, and hopefully a cure.

The Muscle Walk is a non-competitive activity along the San Diego Bay. Last year, our team raised almost $3,000 and together we raised more than $90,000 at the walk.

One thing that took me by surprise was the donations from my law firm’s clients. They called after the event to express support to me and my family, which is why I decided to unveil the story of the hero in my personal life. I do not expect to make a profound difference in one million Americans’ lives, but I do believe in the power of unity and the formation of a strong muscle group to carry those less capable to the finish line.

We, as an extraordinarily blessed family, would like to ask you to consider giving us an extra pair of hands to strengthen our legs to walk farther. Share our story, participate in your local programs, and help your children accept others with imperfections. Moreover, if you are in the San Diego area on March 23, please join us and say hi.

Perseverance will ultimately outlast fear, weakness, or deficiency. And remember, never ever take your health for granted.