BATON ROUGE, LA (WAFB) - It’s happening all over the country. Families are taking pies to the face as part of the latest viral challenge called #smashSMARD.
SMARD stands for Spinal Muscular Atrophy with Respiratory Distress. There are only 100 known cases in the world. The genetic disease affects infants and is usually diagnosed between six weeks and six months of age. It causes paralysis of all muscles, beginning with the diaphragm. There is no treatment, and it’s often described as ALS for babies.
Jessica and Cameron Howell have become experts on the disease after their son, Brooks, was diagnosed in November of 2018.
“Statistically speaking, I guess we're like somewhere around 500 times more likely to win the lottery than for us to meet someone and pass along this recessive genetic mutation to a child,” Cameron explained.
Brooks is now on a permanent ventilator and has been in the ICU at Norton Children’s Hospital in Louisville, Kentucky for over three months. Babies with SMARD often die in their first year of life, but dozens have defied those odds. Gene therapy research provides the most hope, but is expensive.
“Being that the patient population is only 100 people, it's hard to raise that money unless you get the word out there,” Jessica said.
The Ice Bucket Challenge took the internet by storm in 2014, raising $115 million for ALS research. Now, a small network of families hopes to find the same success with the #smashSMARDchallenge.
“We hope that people just find it in their hearts to donate, have some fun, and do the challenge,” Cameron said. “It could save the lives of many many many children to come.”
The Howells spent six years in Baton Rouge before moving to Kentucky. In their version of #smashSMARD, they challenged Collis and Britney Temple. They say they’re counting on their many friends in Louisiana to join the cause.
“It just felt natural for us to reach out to our extended family in Baton Rouge and to ask for help,” Jessica said.