Making a Difference

To my hearts desire, Trey's blog has done so much more than keep our family and friends updated. This tender story is about how instead, Trey's blog has helped a family in their search for a diagnosis for their daughter Kaitlyn. As Kaitlyn's daddy writes;

"June 17, 2009
Hello,
I came across your site while researching my daughter's condition, which her current doctors haven't been able to determine, and from the description and the photos of your son, I believe she may have MPS IV too. I'd love to speak with you a little bit and perhaps get some information on your son's doctor.
The URL that I'm including is a recent photo of my daughter. The wrists, bell shaped chest, knocked knees, short neck and short stature all seem to fit, but I just don't know, and neither do her doctors. Her genetics doctor is baffled and after months of waiting we still don't have any answers.
Would you mind contacting me? I'm going crazy not knowing what she has and I'd really like to get her to a specialist ASAP.
M. O’Donnell, Charlotte, NC

September 8, 2009
I want to thank you for sharing your story with the world via your blog. We wouldn’t be where we are now without it. You’ve raised awareness on the subject, and helped this family tremendously in doing so… so thank you! It’s sucks beyond words that anyone should have to deal with this. I can completely relate to how your husband feels, and I’m sure you too. We feel so hopeless at times because it feels like there is so little we can do for our child, and like most guys, I want to fix something when it’s broken or wrong. This I can’t just fix. And the unknown future and all the negative possibilities that get thrown at us scare the hell out of us, but we fight to hang on to hope, and know, that at the very least, we can get the word out on this disease so that more people are aware of it and hopefully more money can be made available for research. HOPEfully one day soon there will be help for our children. M. O'Donnell


September 13, 2009
The enzyme test came back and confirmed it is Morquio syndrome. Type A.
This is all so surreal to me right now. How did this happen? What are the odds that I could have stumbled on a picture of Trey on Google images and found this rare disease that that our kids both share? All of this just seems so unbelievable. M. O'Donnell

I am shook to tears reading the recap of what entailed many, many detailed emails back and forth between myself and Kailtyn's father. To help, to listen, and to give strength to a family that we understood with every single tear drop, every bit of heartache, and every sleepless hour what they were going through. I remember the pain like it was yesterday...and honestly Mike and I still feel that gut wrenching pain so often like time has just stood still with the feeling cutting just as deep as it did the day Trey was confirmed.

Although it is so difficult to face the reality that little Miss Kailtyn was positively diagnosed with MPS IV A, it sheds a bit of sunlight on the fact that Trey's blog was able to help and possibly keep this family from going through the unknown and misdiagnosis that we endured for an entire year.

God Bless the O'Donnell family, it was my sincere pleasure ~Cami