Happy Dwarfism Awareness Month
When children meet Samuel, I like to ask how old they are. They are usually under the age of ten. Then I ask how old they think Samuel is. Eyes grow wide. No questions come. Just a sweet, gentle acceptance. I may hear a giggle and then off they go to play with other children.
On occasion, a child may ask what is on Samuel’s neck by pointing to their own. I reply it helps him breathe, but I don’t mention the device in question is a tracheostomy. Keep it simple.
I don’t go into the different types of dwarfism. Or share about my son’s particular diagnosis, considered “not compatible with life.” Or say he will stay small. In an effort to spread awareness in honor of Dwarfism Awareness Month, I’d like to share a few stories of this diagnosis.
The umbrella of dwarfism has over 200 types with an adult height of less than 4 feet 10 inches.
Peter Dinklage, Emmy-winning Amercian Actor who starred in The Station Agent and Game of Thrones, has this diagnosis. Matt Roloff and Amy Roloff from The Learning Channel’s show, Little People, Big World live with Achondroplasia has this form of dwarfism. Their son, Zachary, also has achondroplasia.
As you can see, these individuals have achieved fame and success. Faced with short stature, trident like hands, joints which extend more than normal and knees which hyperextend, they did not allow these challenges to hinder their ability to use their God given talents’.
One of Samuel’s fans, who lives in Australia has this diagnosis. His name is Quaden. His mom, Yarraka and I became friends on Facebook. She is also the founder of Stand Tall 4 Dwarfism. (www.facebook.com/StandTall4Dwarfism) Her young son’s smile is bright and full of joy despite surgeries and hospital stays he’s endured. Read this heartwarming story of how a four-legged pooch connected with Quaden in a special way that’ll be sure to make you smile. http://www.news.com.au/lifestyle/home/pets/boy-bullied-for-dwarfism-finds-his-new-best-friend/news-story/18ca552a97cb661650319a16e771f57d
Though Quaden be small, his impact on his family, friends and community is huge.
This is also the most common type of dwarfism, not considered rare or lethal. Samuel’s dwarfism is under the achondroplasia umbrella, but not the same diagnosis.
This condition is rare with an estimated 100 cases of MOPD Type II. A child with this diagnosis grows extremely slowly and remains far behind in peers’ weight and height.* The head grows more slowly than the rest of the body. Prominent nose and eyes and a high squeaky voice are among specific characteristics.
There is a twelve-year-old girl with this condition living in Canada. Her name is Kenadie Jourdin-Bromley. You may have heard of her. Her story was shared on Growing Up Tiny: Kenadie’s Next Chapter on The Learning Channel. In this video, you’ll see this child’s sweet character and the love she shares and receives. Though her stature is small, her impact is mighty.
Click here to see a video of her heartwarming journey. https://youtu.be/s3-QsAaYHug
Thanatophoric Dysplasia Dwarfism
This my son’s diagnosis. Some characteristics are short arms and legs, a flat nose, trident hands and low muscle tone. Lung capacity though is a major concern. Thanatophoric means “death bringing” in Greek. The textbooks did not give me much hope my son would survive birth. But, he did. Thank God.
He needed a ventilator to breathe and spent six months in the hospital trying adapt to a home ventilator. For several years of his life, he received 24-hour nursing care. At around 9 years old, we received another miracle. He was able to breathe without the use of ventilator. Samuel is mapping out his own prognosis. We, as parents, let him show us what’s possible. It’s a joy to see him surprise us at every turn.
His little life is indeed having a big impact by the mere miracle of surviving a “not compatible with life” diagnosis.
Several years ago, the Catholic News Agency produced this video sharing Samuel’s story. http://youtu.be/U4FTTH91UCQ
There are few survivors of this diagnosis; however, through awareness, we hope to change the tide. Sharing this blog helps to share not only with the public but hopefully doctors, nurses and the medical community at large. This diagnosis can be survivable. The proof is in a 24-pound package named Samuel.Miracles Come In Small Packages: A 24-pound package named Samuel. Click To Tweet
Please share and help us to see more miracles come to life.
Author, WIP, A Miracle In My Living Room