10
August
2015
|
12:00 PM
Europe/Amsterdam

Andra Stefanoni: Mother channels grief into event to benefit families of sick children

As I write this column about four families with sick children, my 14-year-old son is sleeping fitfully after being violently ill to his stomach for an entire day and battling a 102-degree temperature for 24 hours.

It has both worried and exhausted me, and it came at the worst time possible with his schedule. But he will get better and life will get back to normal in a few days. For the four families I'm writing about, that's not the case. Their stories are sobering.

Leslie and B.J. Harris know how all of these parents feel. Their daughter, Delylah, was born Sept. 13, 2012, with a congenital heart defect known as tetralogy of Fallot and a chromosome disorder known as DiGeorge syndrome.

She spent most of her 14-month life in the Pediatric Intensive Care Unit, had two open-heart surgeries, viral infections, a blood clot, and a tracheostomy and G-tube. I have written several stories about her, and Globe photographer Roger Nomer and I had the privilege of spending her first birthday with her at Children's Mercy.

Her parents' pain over losing her in November 2013 hasn't lessened - Leslie still reaches for tissues when we visit about it - but they have demonstrated strength by channeling their grief into something positive: Lylapaloozah.

First begun in September 2012 by friends who sought to raise money for the Harris family, it was continued by friends in September 2013. Last year, Leslie decided to continue it to benefit other families with sick children. She held it on what would have been Delylah's second birthday.

This year, she's again holding it on Sept. 13, this time at Schlanger Park - home of the Everyone Can Play accessible playground - and will focus entirely on kid-friendly activities. It also will feature vendors related to children and health, including the Ronald McDonald House, the American Heart Association, NICU Helping Hands, Be Kind Kids, Donate Life and Alex's Lemonade Stand.

Read more via Joplin Globe