The word TJ on the other hand, is the most beautiful word I know. I can never overuse it or hear it too much. It could almost become a way to describe love, faith, or family for me. Kendall, Tom and I still talk and think about TJ everyday. As Kendall says, “We feel him in our heart.” How beautiful for our little guy to actually reside in our hearts.
So, herein lies the struggle. The “have to” feeling. I have to organize the TJ Trot every year now. As much as I hate the word Menkes and everything that it represents, as much as hiding it away and never uttering it again, as much as pretending it never happened, in ways would be so much easier; I have to confront the reality that it is not an option to forget. I do know the word, I do understand what it represents, and I have an obligation to do what I can to prevent a little boy in the future, and his sister, and his mom, and his dad, and grandma, grandpa, aunt, uncle, cousin, neighbor from the heartache and misery that is Menkes.
Last year, together, we raised over $12,500 for The Menkes Foundation. All of that money went to Dr. Kaler and his team at the National Institute of Health to fund research that will lead to at birth screening for every child born in the United States and hopefully worldwide. Imagine that, a little heel prick and a diagnosis. That at birth diagnosis will provide a chance; a chance that TJ never had. There is a treatment for Menkes Disease and if started within the first 10 days of life, the treatment can be effective. There is also a lot of potential for further treatment options once diagnosis can be reached before devastating damage has already occurred.
So this year, on TJ’s second birthday, please come out again and support The Menkes Foundation with our family and know that soon, very soon, significant changes will occur for families that hear the word Menkes. Please know that the hope and the chance that these families will be given is directly related to your choice to support a rare disease and a little angel who lives in our hearts.
I love you little guy! Let your faith be bigger than your fear.