SMARD Guest - Dakin

Didn't you just fall in love with Presley?
I know this little man will melt your heart as well.
I first saw Dakin through his Mum's blog before we knew Makenzie was even sick. I thought he was a doll. I never ever thought I would soon have so much in common with this family. He has a wonderful story and I really admire his family.

Meet Dakin

Dakin was born a seemingly healthy baby, but at three months of age could suddenly no longer breathe.  He was lifeflighted to Dallas, given a tracheostomy, and sent home three months later with no answers as to why.  Finally, he was diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD), a rare, untreatable and incurable disease.  A disease that steals a child's ability to breathe on his own, as well as walk and in many cases eat or even smile.

For three years we have dealt with the hand Dakin was given, trying our very best to give him the best and most normal life possible.  We take him to restaurants, to the park, to church and playgroup.  He has gone to a rock concert, met a head of state and later this year we are planning a trip to Disney World.  He plays, sings, counts in French and Spanish, and is the most vibrant, intelligent and vivacious child you would ever meet, despite his limitations.  But for those three years we have privately struggled with the fact that we could do nothing for him.  Nothing.

Until now.  Promising research at the Jackson Laboratory may be able to lead to a treatment for Dakin and other children affected by SMARD.  For the first time in three years we have some hope.  Hope that Dakin could dance on his own feet at prom, unencumbered by a ventilator.  Hope that he could go scuba diving if he chose.  Hope that he could pull all the toilet paper off the roll when no one is looking.  Hope that he could just do what he wanted to, whenever he wanted to.  

One thing I have learned about life is that it is so much more than walking, or even breathing on one's own.  Despite his label, Dakin is a fighter who has continually laughed in the face of debilitating disease.  And you can help him continue to do so.  Please help forward the Jackson Laboratory's SMARD research by attending the MRW Live, Laugh, Breathe event.  Or if you are unable to do so, please consider making a donation to the lab.  

Help us continue to hope. 

Read more about Dakin HERE


Anonymous said...

Both Presley and Dakin are amazing and adorable children. It will be a honor to help with the SMARD fundraiser this year in Kenzie's honor. She too was amazing and I think of her every day. I love her and I miss her. Aunt Mary

Anonymous said...

Both Dakin and Presley are amazing children and their parents are too. Someday.....this disease will be conquered and will never effect the lives of good families. But until then, we will help you raise funds for research in honor of your Kenzie. I miss her and love her. Aunt Mary