Tuesday, March 8, 2011


I am saddened by the loss of another child in my support group, who suffers from the same syndrome as my son. Trichothiodystrophy is an awful beast. He was five years old. With a family of less than 50 children, each loss is a painful reminder that something as simple as a cold could take my child away from me. I hate that there is no cure, no treatment. It breaks my heart to have to give him injections of pain medications every evening just so that he can sleep and even then he still hurts. It is hard to know that at the end of the day the priority is pain management, quality rather than quantity. I see parents stand by their child’s side as they fight through treatment to over come what ever beast they are fighting, and sadly I am jealous. I am jealous of their hope and gift of the opportunity to be able to fight. Next month we are flying to Maryland to see Bubba’s team of doctors at the National Institute of Health, I know that these trips will not help or cure him but I have HOPE that one day what they learn from Bubba will help another child. So my friends, love your children, hold them tight, cherish every tear, every smile and the sound of their laughter. NEVER take their health for granted. Please keep Daniel’s family in your prayers.


Clay Boggess said...

Thank you for your encouragement and inspiration. At times it is so easy to take our children for granted.

Katie said...

Thanks for always remonding me how special it is to be a mother.. my heart goes out to that family. They are in my prayers.

Rachel said...

So very sorry!

There are just no words. What an awful ache.

So thankful for the miracle that Bubba is.

Foursons said...

I'm so sorry to hear this. It must break your heart.

I have a question though. Are there only 50 diagnosed cases of this disease or am I misunderstanding?

Presley family said...

There are less than 100 known people living with TTD. That is just how VERY special Bubba is... wink!

Susan said...

Such a heartbreaking tragedy. My prayers are with this family with added hopes that they can imagine the joyful health their child now enjoys in God's embrace.
Yes, Bubba—and all these children—are truly special in so many ways.