I'm also putting together a collection of stories (like Chicken Soup for the Soul) from care givers of children with Down Syndrome who have experiences with successful treatment for our children. TNI (Targeted Nutrition Intervention) success, CMF (Changing Minds Foundation) success, ND (Neurodevelopment) success, success with herbs, TCM (Traditional Chinese Medicine), etc.
These stories can show the world and medical community that our children can be helped and are being helped.
Despite my son, Jett's, diagnosis and challenges from it (hypothyroidism, heart surgery etc.) he is doing very well and his story needs to be told. But he is not alone. He's not an isolated case and it is important that he not be viewed as an exception. There are parents and physicians who are making a difference in our kids and it should not be kept a secret.
For instance, one of Jett's symptoms caused from DS is nystagmus. Nystagmus, in Jett's case, is an occular flutter--his eye moves quickly from side to side involuntarily. If you search online, you will see that there are 273 possible reasons for nystagmus and that by all but two counts that I found (people who posted on a forum), nystagmus is incurable. After more research, I found that it is most likely, for Jett's to be caused from a malfunction in part of his brain. Also, various chemical processes that are compromised due to T21 can cause muscle laxity, which could contribute to nystagmus. I contacted the only two people I could find who said their nystagmus was cured... Long story short, Jett's nystagmus is gone. No flutter at all whatsoever is present. Not thanks to optometrists (who said it was incurable), but to a Mom and a man in NY whose clues led me to a practitioner of Traditional Chinese Medicine here in Orlando.
If you'd like to share your story, please email me at firstname.lastname@example.org.
Again, my degree is in English, with my concentration in Creative Writing. So, you don't have to be a writer--just a parent seeing and nurturing that spark in our kids!
Thanks so much!
Mom to Jett, 14 months and awesome!
Requests for Stories of Medical Discrimination