A Miracle Turns 14-Years-Old

Birthday Boy Laugh
14-year-old Birthday Laugh

Three Types of Dwarfism

Have you ever heard of Thanatophoric Dysplasia Dwarfism? Of the over 200 forms of dwarfism, this type is considered “not compatible with life.” My son Samuel has this type of dwarfism. Though his prognosis was poor at birth, he overcame all odds to become a miracle. He will be turning 14-years-old on August 2nd.

You may have heard of Primordial Dwarfism or Achondroplasia, which are also forms of dwarfism. As of 2018, there were not more than 100 cases in the United States and Canada of Primoridial Dwarfism. Adults with this diagnosis don’t grow taller than 33 inches and are some of the smallest people in the world.

Achondroplasia is the most frequently diagnosed cause of short stature. The average height of adults is 4’0″.  This diagnosis appears in one per 26,000 to 40,000 births. Peter Dinklage from HBO’s Game of Thrones has this type of dwarfism.

Thanatophoric Dysplasia (TD) dwarfism occurs in one in 30,000 to 50,000 births ((1/33,330 to 1/47,620 to be exact.)* Thanatophoric in Greek means “death bringing.” Therefore, parents are not given much hope with this diagnosis. Unlike Primordial dwarfism and the more common form of dwarfism, Achondroplasia, survivors of Thanatophoric Dwarfism are limited approximately two dozen worldwide.

*www.researchgate.net

Survivors of TD

The survivors of TD are found all around the world. Russia, Mexico, Germany, and many in Brazil. These sweet babies display a special brand of joy that can be clearly seen in their bright smiles, belly laughs and cute giggles. As with many children with disabilities, they are unaware of their challenges and like most children flourish under the love of their parents, siblings, family and friends.

Do they have challenges? Yes. Living with a tracheostomy, breathing with a ventilator*, having a g-tube and needing to suction your child when he/she coughs or needs a saline or albuterol treatment all comes with it’s own set of challenges. However, I believe the love of a parent, though finding these things challenging, finds that love wins out.

*Samuel came off the ventilator at age 9.

A Parent’s Love

And that is what I’ve been doing these last 14 years. Loving Samuel with everything I have to give. Some people comment that it must be hard for me to raise a medically fragile special-needs son. I’d answer, “He is easy to love.” And, yes, we’ve had many trials and stresses, many of which I have written about in my memoir, Miracle In My Living Room: The Story of a Little Mann. (www.miraclemann.com/book-store) But those trials pale in comparison to the joy my son has given me and so many others around the world.

Celebrating A Miracle

By God’s grace, my son continues to overcome all odds by surviving a “not compatible with life” diagnosis. We still daily pray for our little guy. And as with raising children in general, we have ups and downs through it all. But this smile makes it all worth it.

Miracle Mann Smile
Miracle Mann smile at 14-years-old

Past And Present Photo

And to think, when he was born we were told he may not live past birth. He needed a tracheostomy performed within two weeks of life. And he needed a g-tube within six weeks. From the early days of his oxygen dropping drastically, needing manual and mechanical ventilation, and bradycardia’s to today, the difference is miraculous, as you can see in this picture. There is hope for TD babies.

A Miracle turns 14-years-old
A Miracle turns 14-years-old

Fans of A Miracle

Since the inception of this blog and the Facebook page, www.facebook.com/amiracleinmylivingroom and the Instagram profile, www.instagram.com/miraclemann17, we have many fans follow our little man’s story from around the world. This graphic below shows just a few places where Samuel’s fans are from on Instagram.

Miracle Mann Fans
Miracle Mann Fans

The Smiles Seen Around The World

Posting pictures of our little guy has been a joy. His smiles bring hope to a diagnosis that offers little hope. We even had one doctor say the name of his diagnosis should be changed from Thanatophoric or not compatible with life to something else. Perhaps another survivable sub-type. Until that happens, I’ll continue to share this smile with the world.

A 14-year-old Samuel Smile
A 14-year-old Miracle Smile

Samuel’s smile has also been seen on the program, Body Bizarre by The Learning Channel. His smile and antics on his boogie board has been seen from Australia to Russia and throughout the United States. He was featured on the local news, WFLA Channel8 by Meredyth Censullo. She captured the essence of his joy sharing it throughout the Tampa Bay Area.

Chris from Special Books by Special Kids interviewed Samuel. This video has been viewed over 2 million times, helping to share Samuel’s laugh (see the laugh at the end of the video) to a whole new world.

I Love You, Samuel

As we celebrate our little miracle man’s 14th Birthday, I’m amazed at how many people love our sweet boy. From family & friends to church and all his fans, it’s simply inspiring. Not only to me but to all in the special needs community. Being different is super special, don’t you agree?

Big Things Come In Small Packages Click To Tweet
A 14-year-old Miracle named Samuel
A very loved 14-year-old Miracle

Miracle Maker

I’m so grateful God still performs miracles. Before Samuel, I thought miracles happened to people in far away lands with way more faith than mine. I loved hearing those stories and would often read books about miracles. I never imagined I would become a mother to a miracle myself. I received a miracle 14 years ago and I’m still awed by God’s grace.

A 14-year-old miracle
The Miracle Maker Smile

If this little guy has inspired you in anyway, leave him a birthday message below. It’ll warm this momma heart to no end. Thank you for reading this blog, for following our little guy, and for loving him from near and far. Your support has meant the world to us as a family. And your encouragement had blessed us in so many ways. So excited to celebrate Samuel’s 14th Miracle Birthday with you.

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11 Thoughts on A Miracle Turns 14-Years-Old

  1. Happy birthday Samuel!!! I can’t believe you are going to be 14…WOW!! I will send you your birthday present. I love you!
    Hugs and kisses!!! Cecilia

    Reply
  2. Happy 14th Birthday Samuel!!! Ive loved watching you grow!!! Your smile and laugh always makes my day!!!! Have an amazing birthday!!!!!

    Reply
  3. Happy birthday Samuel! Happy birthing day Mama xx

    Reply
  4. Dear Samuel, you are a blessing and an inspiration to all, Wishing you a very happy and wonderful birthday… you make the sun shine, and the stars sparkle, im honored to know you and your family through facebook… All the best from your Florida friends, and all of us at Special moms…. love and hugs..and many more wonderful birthdays to come….

    Reply
  5. Samuel,

    Your story gave us hope when our baby was diagnosed with TD. Because your mom shared your story, we knew our son could live a happy life, even though doctors had a hard time believing it to be true. Tomorrow OUR little miracle man will be 11 months old!

    Happy birthday to you, Samuel!!

    Reply
  6. Samual, I had the honor of meeting you and your parents many years ago. It has warmed my soul to watch your progress, defying all odds. Happy Birthday sweet young man!!!

    ❤️🎂. Cheryl Hinton

    Reply
  7. Happy birthday Samuel! You and your family share the joy that only Jesus can bring. Your smile and sneaky grin remind me to find the many blesses I have in life no matter what my circumstances and health situation. Thank you all for being used by God to challenge and strengthen me. I am blessed to have y’all in my life.

    Reply
  8. Happy birthday Samuel! I hope you have a great day filled with everything you enjoy!

    Reply
  9. Happy Birthday, Samuel!!! Praise the Lord for the blessing and testimony of your life!!!

    Reply
  10. Happy birthday samuel.

    My daughter has geleophysic dysplasia a rare form of dwarfism. 4 ft 2 inches. She is 26 and has outlived her prognosis as well.
    I love miracles especially when your own child is a known miracle.

    Reply
  11. Happy Birthday to our precious miracle boy. You have been such a blessing to all who know you.

    Reply

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