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 less 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 to approximately two dozen worldwide.
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 they flourish under the love of their parents, siblings, family, and friends.
Do special needs parents 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 its own set of issues. However, despite these hardship’s, these parent’s find that love overshadows their circumstances.
*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.
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.
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.
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.
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
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.
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.