Rickie Lee Tanner / Blog

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My Son Rhett

Friends, My son, Rhett, has a rare disorder called Primary Carnitine Deficiency. This disorder is treatable, when it is actually discovered. There are tests that can be done on each child at birth to determine this. Please take 5 minutes from your busy day to read the following information. If I can educate just one more person about this illness, and they can tell one of their friends, and so on, then maybe we can make a difference. The earlier this disorder is discovered, the easier it is to stop its effect with a simple supplement taken daily. It sounds too simple doesn't it??? I thought so too. My son had the supplement for the first 6 months of his life, and he appeared to progress reletively normal during that time, considering that he was very sick(with all of the symptoms listed below), and premature at birth. At six months, he was taken off of the supplement to "force" his body to try to make what it needed on his own. He went for over a year without the medication, and without progressing. He didn't crawl, walk, or talk during that time. At 20 months he was again, started on Carnitine supplements. Within 2 weeks he started babbling, and increased his vocabulary from 5 words to 25 words, and he also started to crawl at that point. At the 4 week point he started to walk. Now, 10 weeks later he is running, he is talking more, and with intense therapy 3 times a week, he is rapidly catching up to other children his age. He will be 2 years old on March 28th. His future looks a lot brighter on this birthday than it did when he turned 1 year old. We are very thankful for our family, but there are still families out there that have never heard of this and maybe they are facing a future that includes SIDS or a diagnosis of autism. Every child should be tested at birth for these types of deficiencies that MAY cause these terrible disorders. Some states do these tests, and some don't. Please make it a point to forward our story on to as many people as possible so that we can, together, make the people responsible for deciding what tests are necessary for our children, sit up and take notice that this really does matter, and it really can make a difference. Thanks, Rickie Lee, Tonya and Rhett Tanner FOR MORE INFORMATION PLEASE LOOK TO OUR FAMILY'S SUPPORT GROUP AT WWW.FODSUPPORT.COM

Terie Vass
Terie Vass  (almost 4 years ago)

As the mom of an austic adult child, my heart goes out to you. If your son has developement issues later, the Lees Summit school district, Greenwood Elementary specifically saved my boys lives! They had amazing staff and progams. Both of my sons live to completely normal life now. Miracles happen every day. Much love support. Terie.