A few weeks ago, we visited KXAN here in Austin, but our interview was preempted by coverage of the French Open so we recorded the segment and it was to air on the 17th. Well, then there was a little mishap and our segment got erased. Instead of just moving forward, the producer called me personally to apologize and so graciously invited us to come back and try again.
So, this past Wednesday, we visited KXAN studios again, this time to do our interview live. We are so grateful to our friends at KXAN Austin News for allowing us to share our update on Braxton’s diagnosis and to talk a little about U.R. Our Hope, the organization who has been walking with us every step of the way along this journey. Dr. Parker, the medical liaison for U.R. Our Hope and our Physical Therapist (they mixed up her title on the video) joined us in our interview.
Here is the link to the full story on KXAN: Parents triumph in toddler’s diagnosis
And here is the video!
Being able to share our story has been so incredible because of the awareness that has been raised. There are so many people who don’t know that a child CAN in fact go without an actual diagnosis for so many years, that a child may NEED a feeding tube to survive and thrive, and they may have never even heard of Rubinstein-Taybi Syndrome. Heck, there are some physicians who have never heard of it! So, with every person that reads our blog, visits our Facebook page, sees our news story, there is something so much more happening. Every view is one more person who can say “Hey, I’ve heard of that” or “Oh, I saw this child on the news with a similar situation.” when they or someone they know finds themselves in a situation like this. We had no idea until it was all thrust upon us, and now we want to be able to share our experience so that we may help others.
This journey can be incredibly rewarding, but it is without a doubt difficult at times. We want to make sure others know that they aren’t alone. You don’t HAVE to walk this path by yourself. Find a support group. Reach out to a parent who’s “been there.” Trust me, it makes all the difference in the world when someone can reach back and say, “Hey, I’ve been there too and I know exactly how you feel.”