MiracleMom's interview
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How did all start?
I went to my doctor for my 20 week sonogram when he told me my son was growing slowly.
Do you already have a diagnosis? How long did it take you to get it?
We did not get a confirmed diagnosis until 2 weeks after birth. It took 2 weeks in 2005 to get returned test results.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Primarily, my son's medical specialties are followed by pulmonology.
What has been the most useful thing for you so far?
Therapy to increase lung strength.
What have been your biggest difficulties?
Learning the ins and outs of medical jargon and learning to advocate for such a rare diagnosis.
How has your social and family environment reacted? Have your social or family relationships changed?
My son is accepted and love by all who know him, from medical staff to friends and family.
What things have you stopped doing?
Initially, we restricted travel. After age 3, thanks to Make a Wish, we reversed this trend and traveled through out the U.S. and Canada.
What do you think about the future?
My son blazes his own trail. We live each day in awe.
So far, which years have been the best years in your life? What have you done during them?
We are so thankful our son is medically stable and full of life & joy. We learn to "smell the roses", so to speak, daily.
What would you like to do if you didn’t have your condition?
I'm not able to answer this question for my son.
If you had to describe your life in a sentence, what would it be?
As Samuel's mom, I can say my son is joy in a bottle. His laugh and smile are infectious. He touches lives around the world without saying a word.
Finally, what advice would you give to a person in a similar situation?
Do your research. Check out my son's website at www.miraclemann.com and purchase the full story, Miracle In My Living Room: The Story of a Little Mann. Encouragement for moms can be found in the devotional: Thriving Through Your Trials. Both are written by myself, Evelyn Mann. Review information about dwarfism in general at Little People of America at www.lpaonline.org. Join the Facebook Group: Thanatophoric Dysplasia Pregnancy & Survivors Group. Contact the doctors at Dupont/Neumors Hospital in Wilmington, DE who treat children with TD. Or message me on Facebook at Evelyn Kraemer Mann.
