Meet the inspiring Lovelace family from Texas. Their son, Dakin, has SMARD, an extremely rare form of SMA. They have committed to helping raise $100,000 for Dr. Keirstead’s SMA stem cell program at UC Irvine to help get it to and through human clinical trials as quickly as possible.
Why are the Lovelaces uniting for the cure?
Meet the Lovelaces—Dakin, Devon and Dakin (Big Dakin has been trying to saddle little Dakin with the awful nickname ‘Deuce’, but Devon is having none of it). The Lovelaces are thrilled to be joining up with Unite for the Cure! They feel truly fortunate to be part of such an amazing group of people!
Dakin and Devon tried for over a year to get pregnant. When they finally did, they were nervous but enthralled. As soon-to-be parents, they were of course concerned with the health of their child, and were relieved to hear over and over again how healthy the baby was. Dakin was born on Halloween 2007.
Three months later, Dakin couldn’t breathe anymore. Literally, one day he couldn’t breathe. Through a string of events that they can label with no other name than ‘miracles’, Dakin was stabilized and lifeflighted to Dallas, where he and Devon spent the next 2.5 months.
No one could come up with an explanation as to why this perfectly healthy child couldn’t breathe. Doctors bandied about theory after theory, but nothing really fit. They were discharged from the PICU with a tracheostomy and a ventilator and told “he’ll grow out of it”, something they desperately wanted to believe.
But something just wasn’t right. Devon spent evenings at the rehab hospital searching on the internet for some reason to what was going on. On Wikipedia, of all places, she found a disease called Spinal Muscular Atrophy with Respiratory Distress (SMARD). Praying that the SMA test that Dakin had been given would have ruled out SMARD, she contacted the geneticist, who informed her that a ‘regular’ SMA test would not have identified SMARD.
Dakin finally saw a neurologist who had the same theory as Devon. He was tested for SMARD and the result was positive. Dakin is one of maybe 60 people in the world with SMARD. The Lovelaces have only been able to contact 6 other families with affected children.
No one in the United States is researching a treatment or cure for SMARD. There has been successful stem cell work done in Italy on SMARD, and so that is why the Lovelaces are joining up with Unite for the Cure. They hope that Dr. Keirstead’s research can some day be applied to SMARD as well—this is the only hope they have for a treatment or cure for their son.
You can follow their journey on their blog at VentSuperman.blogspot.com.
