DANBURY — Jarrod Smith remembers what it was like coming home to do an auction after his third daughter, Demi, was born with a rare chromosome disorder in October 2011.
An Angleton lawyer and volunteer auctioneer, Smith had made the commitment before knowing there would be any medical problems surrounding Demi after her birth.
When he started to leave to head back to the hospital, a friend stopped him and handed him a gift card to pay for gas between Brazoria County and Texas Children’s Hospital in Houston, and to help with parking once he got there, Smith said.
“Every time I’d use that card, I thought about the people who cared enough to give it to me,” he said.
After losing Demi unexpectedly to an unknown illness Dec. 1, Jarrod and his wife, Hayley, wanted to make a point of remembering their little girl, but also the people who supported them while Demi was alive.
“This past December, she got sick, and we still don’t really know why, but she never got better,” Hayley Smith said. “When we came home, there were people who came by and put up our Christmas lights, and endless amounts of food, and I even had a friend who called my hair dresser and she came and did my hair. I could write a novel with all the things our friends and family did for us.”
The couple, along with their 7-year-old twin daughters, Madeline and Hannah, is ready to do those types of things for other families through their nonprofit, Demi’s Difference.
“We started a memorial fund at our church, like in lieu of flowers please give, and we were trying to come up with something we could do to give back and make a difference. That’s how we got the name Demi’s Difference,” Hayley said. “We want to use the money we raise to go do those things people did for us.”
With the slogan, “Let your light shine,” the Smiths don’t want Demi’s death to be the end of her memory and impact on the world.
Hayley, a former teacher turned stay-at-home, said Demi was a happy baby who would just laugh and laugh all the time. Hayley has videos saved in her phone of Demi laughing so hard she’d cough.
Demi’s bedroom is decorated in bright yellow, and that’s the color that most reminds the family of her — bright like sunshine and always offering a bit of happiness to everyone she met.
“Her laugh was contagious,” Hayley said. “We’d be in elevators at Texas Children’s and people were just drawn to her.”
In 10 days, the Demi’s Difference Facebook page has received more than 1,600 “likes.” The Smiths are working with volunteers and community members for their first fundraiser, set for April 19.
“We have a group of about 40 to 50 volunteers who have said, ‘Just tell me where you want me and what you need,’” Jarrod said.
The Smiths reached out to Texas Children’s Hospital to see how they best can help patients and families there, and they also plan to reach out to help local families as well, Jarrod said.
“Texas Children’s made clear they have some needs,” Jarrod said. “When people think of children in the hospital, they usually think toys, which is great, but there are some other gaps. Like they need clothes, toiletries, money for parking.
“We want to go in and make a difference in that way. I’m excited to do that. I think it’s part of the healing process for our family.”
Hayley envisions looking back a year from now at a highlight reel of all the ways her family and their organization have helped other families.
While Demi’s condition was so rare it didn’t have a name, the Smiths know other families are going through similar trials with sick children. Hence, the Smiths know just how significant reaching out and saying “Here, have this,” can be, Hayley said.
“We don’t want this to be the end, to be her end here,” she said as she wiped a few tears from her cheeks. “A family may not have the situation, but if they have a need we may be be able to step in. We want to keep that joy going.”
To find out more about Demi’s Difference, go to demisdifference.com or find the page on Facebook.