Thursday, March 1, 2012

{RARE}

In honor of National Rare Disease Day yesterday I wanted to share my son’s story with you. Shortly after our son was born we were told the worst news possible. “We don’t expect him to make it to his first birthday.” And if that wasn’t enough “we don’t expect him to sit up, talk, walk, do much of anything… your son will be in a vegetative state his entire life.” Our hearts were broken to find out that our son was diagnosed with a very rare life threatening disorder called Trichothiodystrophy. {109 diagnosed cases in the WORLD} There is no cure for this awful beast but there is hope! Collin is now 11 years old and lives a very happy life. We have had to watch this beast take over his body but it has not defeated his spirit. My hope in sharing his story is that those just beginning on this long journey will see that there is HOPE.

12 comments:

Melinda said...

A M A Z I N G!

how much did Bubba weight at birth?

Leslie said...

I have been following your blog for some time now but haven't ever posted a comment (I found your blog through my friend Lindsay Ward.) When I heard the music you picked for this video I HAD to leave a comment - it is one of my son's favorite songs and I just wrote about it on my blog this week! My name is Leslie, and I was friends with your husband in high school. He was a great guy who always made me laugh, and he was an awesome example to me when I was learning about the church. From what I can tell through reading your blog, Jason found an incredible woman!! I have laughed and cried through so many of your posts. I appreciate your amazing faith and strength and am so grateful for your willingness to share the ups and downs of life with everyone through your blog! My blog is private but I'd love to send you an invitation if you're interested... my email address rousehouse4@juno.com

Susan said...

Hard not to shed tears through this film—but hard to describe what kind of tears they were. Happy, because Bubba sure showed those first doctors what extra stuff he's made of! And then, the opposite, because the thought of the world someday being deprived of the sunshine in that big ol' grin is a sad one. I pray every day that the happiness in Bubba's life will translate into whatever he needs, health-wise, to keep him going. Those doctors early in his life had no idea the health boost he was going to get from the perfect love his family gives him. You are ALL beast slayers!

Sherri said...

Beautiful. I thank you and your amazing family for being such an inspiration of hope and faith. Miracles DO happen, and your family is living proof. I don't know if you remember me, but you came to my girl's night out craft night about year ago. I've read your blog ever since! May God continue to bless you and your sweet, sweet family. Xoxo

Karen said...

Beautiful...just beautiful...I've learned so much from your family...You have touched me in so many ways!
Bless you...
Love, From Wisconsin

Presley family said...

3 lbs. 8 ounces

Presley family said...

3 lbs. 8 ounces

Presley family said...

Thank you Susan. You always have such sweet things to say! BIG HUGS my friend

Presley family said...

Thank you Sherri! Of course I remember you and your super fun GNO. Shoot, I am in need of another. Wink!

Charlotta-love said...

Julie,
This post was amazing. You truly are blessed - as are all those that know you.

Crystal Anders said...

Love the video!!While I set and watched it I just started to cry like a baby..It was like watching my Bubba grow up..Since our Bubba's look so much alike...The only thing different is my bubba walks and talks..

Dawn Marie said...

This is a beautiful video. Thank you for sharing this. Brings back so many memories. love you!