My Son’s Dwarfism Taught Me Gratitude

My son, Samuel, has dwarfism. Not the kind of dwarfism seen on television, but a rare and lethal type called Thanatophoric Dysplasia. In Greek, this diagnosis means “death bringing.” I, however, chose to live as if it means “life giving.”

It’s easy to see this preferred definition in our son’s smile.

Due to life-threatening dwarfism, doctors said Samuel wouldn't survive birth. Now, he's not only alive but teaching his parents valuable life lessons!

His fits of laughter and giggles fill our home with joy and bring this condition into a different perspective. One doctor even suggested his diagnosis be amended because our son is very much alive!

The odds my son had to overcome are hard to comprehend. At one point, he was on a machine which delivered 200 breaths per minute. The doctors gave him Morphine to keep him still. We were told he would die. Worldwide, only 8 other babies with this condition have lived past birth. Samuel was number 9.

The miracle continued when he came off his ventilator a few years ago. With this freedom, we gave Samuel a new view of the world by driving to see one of the wonders of the world—Niagara Falls. From the grand to the mundane things (like playing with drawers), our little man enjoys life.

Due to life-threatening dwarfism, doctors said Samuel wouldn't survive birth. Now, he's not only alive but teaching his parents valuable life lessons!

We approach each day being a family of three. A happy, healthy, little family. Sometimes, I hear of a wee one with this diagnosis living only hours or few days, and I wonder how my sweet son ever made it out of the hospital.

With this knowledge in the back of my mind, I’m reminded to enjoy this precious gift and cherish every moment.

I have learned that I must choose to pause every time I walk by a beautiful rose in full bloom to savor its fragrant perfume. And so too, I must stop and savor the laughter in my home. I choose to put down my laptop, scoop up my son into my arms, and tickle him for the pure joy of it.

At times, I’m reminded of my son’s fragility. Every night, I turn on Samuel’s pulse oximeter, which reads his heart rate and his oxygen levels. I watch the numbers change. I do a happy dance if I see a 95-100% oxygen level and a heart rate in the 70s as he sleeps. Otherwise, I pray.

As I type this, his oxygen numbers are blinking red. An alarm sounds. My husband turns on the concentrator to supply my son extra oxygen. The number turns green as the machine works to give my son what he needs. His heart rate is in upper 70s, which makes this Momma happy.

The fragile side of Samuel reminds me to daily cherish this gift we’ve been given. To be thankful for health, love, and laughter. Especially the laughter of a child.

Due to life-threatening dwarfism, doctors said Samuel wouldn't survive birth. Now, he's not only alive but teaching his parents valuable life lessons!

Evelyn Mann

Evelyn Mann

Evelyn Mann is a special needs mom raising her son born with a rare form of dwarfism. Though originally told her son would not survive birth, God had other plans. Only 1 of 9 survivors worldwide, her son Samuel has overcome all odds. Mrs. Mann has appeared on Fox and ABC media as an expert in the subject of dwarfism. Hey debut memoir, Miracle In My Living Room released on November 30, 2016. It is available from Amazon, Barnes & Noble, and on her website.

10 Responses

  1. Thank you for sharing, Evelyn. I feel humbled. “I must choose to pause” – very true and necessary to engage with beauty, positive energy and hope.

    • Evelyn Evelyn says:

      Thank you for commenting. I so agree. And often I wonder at how hard it is to pause. Before I know it the day is gone and I haven’t taken a moment to truly exhale. Just being mindful to live in my son’s smile reminds me to enjoy what gifts I have been given. To truly enjoy. I’m so glad this article was a reminder to you… and to me too.

  2. From the first moment I read your story, I felt like you had something unique and powerful to share, Evelyn. This isn’t something you read about every day. And your reaction to these unique circumstances is just as rare as that survival rate. You are such an incredible role model. I feel honoured to have your story here.

    • Evelyn Evelyn says:

      My heartfelt thanks to you, Vironika for sharing your platform to bring Samuel’s story to a whole new audience. You saw the theme of hope recognizing the power it brings and the power to inspire. When Samuel brings hope and inspiration to others, I am awed. Thank you for your kind and touching words. So appreciated.

  3. I find it very moving and inspiring that you are able to focus on your blessings instead of the many challenges that you face every day. Samuel is very fortunate to have such a loving and accepting mother. Thank you for sharing your story.

    • Evelyn Evelyn says:

      Thanks for picking up on that point, Ken. Yes, we have challenges raising our special needs son, but the love and joy he brings far outweighs anything else. I’m blessed with a wonderful husband and we tag team a lot. So glad you liked the article. : )

  4. Don Karp Don Karp says:

    You are fortunate indeed to have Samuel. And I am sure that the love you give him is why he survives. What a life lesson! Great article! Best wishes with the new book.

    • Evel Evel says:

      Thank you so much, Don. I appreciate your good wishes. Yes, we love our little guy. I often tell people, “He is easy to love.” That comes from a mother’s heart. So excited his story is now available in book form. Thanks for commenting!

  5. Evelyn Evelyn says:

    Thank you, Rae. Your comments are heartwarming. So blessed you follow our journey and I so appreciate your encouragement. Many hugs, from one TD mom to another.

  6. Rae Stabosz says:

    It’s always inspiring to read about Samuel. God bless you, Evelyn, for all that you do especially for nurturing your son’s life and giving him the love that he needs in order to love you and the people in his life back. So many kids in situations like his never get that chance. Blessings on you all.

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