Many of you may already know, but John (my husband), writes a weekly column about 'all things running' and our goal of running a 1/2 marathon. Each Thursday, the column is in our local town paper, 'The Country Chronicle.' I know many of you who follow this blog, may not live in our town, so, below is his column for this week. Enjoy!
About the hardest thing my wife and I have done in preparing for the half marathon has been selecting a worthy cause to run in support of. There are a number of different worthy causes we considered and we had the most difficult time choosing one over another. Then very suddenly it became extremely clear what our purpose and mission for running a half marathon would be. Michelle and Gregg Jowers are long time friends of our family and they have three beautiful daughters. Very recently they found out their youngest daughter, Kayla Reese, who just celebrated her first birthday, has an extremely rare chromosome abnormality called Tetrasomy X—also known as Tetra X. The chromosome abnormality is so unbelievably rare that there are only about 100 known cases worldwide. To put it in perspective one in 68 million people on this earth is known to have this chromosome abnormality.
Kayla Reese, who is an extremely precious little girl has the only known case of Tetra X in South Carolina. There are only 60 cases in journals worldwide to for doctors to even read about. The few case studies that exist explain the symptoms of Tetra X can range from mild to severe, but include motor and speech delays, hypotonia, vision and hearing problems, difficulties learning, below average IQ, heart, kidney, and ovary defects to just name a few of the issues associated with this abnormality.
Needless to say, the Jowers were shocked and saddened by news of their baby girl having Tetra X. There are many aspects about Tetra X that are tough to deal with, but since it is so rare there is so little information known about how to treat it. Michelle, after taking in her child’s diagnosis said, “after wallowing in my own self pity, I bucked up, put on my big girl panties and boxing gloves and am gonna fight for my sweet baby girl! At no time did anyone say she ‘can’t’ do something, so my view is that Kayla Reese can do anything she wants to and I am going to give her every tool I can to give her every chance possible.” We are excited that Michelle is going to join my wife and myself in running the Chicago Rock ‘n’ Roll Half Marathon in August in support and for the love of Kayla Reese.
Our first goal of running “For the Love of Kayla Reese” is to bring awareness to people about Tetra X. We will bring you information soon on how you can support the cause we are running to support. Please visit our blog at: http://www.race2chi-town.blogspot.com to learn more about Kayla Reese’s story and our experiences in preparing for the half marathon.
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