GIVING BACK: Life-Changing Surgery for Kids with Cerebral Palsy
Ella is 4 years old and loves swimming and gymnastics. Alex is 6 and competes in karate. Sophie is 7 and takes ballet and makes her own YouTube videos. While each of these kids has his or her own unique personality, charms and hobbies, they do have one thing in common: they all have cerebral palsy. To help treat their condition, each of them has also undergone a life-changing surgery called “selective dorsal rhizotomy,” or SDR.
“We did a lot of research into what our options were for Ella,” says Simon, the Dublin, Ireland-based father of 4-year-old Ella. “We came across SDR and contacted two Irish families whose children had the procedure. We met their kids, saw videos of their condition before surgery and saw them running around before our eyes. We very quickly made up our minds to do it.”
The only procedure of its kind, SDR essentially involves cutting some of the damaged sensory nerve fibers that are causing muscle spasticity, significantly reducing and often even eliminating it. The challenge for many families, however, is the surgery is available in only a few cities in the world, and the regarded expert in SDR, Dr. TS Park, is at Children’s Hospital in St. Louis, Missouri. For these Dublin-area families, the cost of travel to and from the US, accommodations while there and the surgery itself is staggering—not to mention the two years of intensive physiotherapy and strength and conditioning that follow.
That’s where Structure Tone’s golf classic comes in. This annual event brings together Dublin’s construction community to play golf and raise money for a selected child each year. Each year 32 teams compete, with more clients, consultants and employees supporting the post-golf evening event, including a live auction hosted by Structure Tone’s Richard Hemming. To date, the golf classic has raised over €200,000, all of which has gone directly to each child’s family to help fund their SDR quest.
“While there are many worthwhile institutions and organisations that help children with conditions like cerebral palsy, we really wanted to do something that we knew directly supports a child who urgently requires funding and is without any state or government support,” says James Reidy, managing director of Structure Tone’s Dublin office.
The influx of support from the event has certainly made a difference to the families who have participated so far. “We needed €150,000,” says Simon, whose daughter, Ella, was the focus of the 2016 golf classic. “The fact that Structure Tone hosts an event that eats into that significantly and lends support to families like ours is amazing.”
The event itself puts the entire focus on the child. The family comes for the day, tells their story, talks with participants and put their own stamp on the day’s décor and festivities.
“Oh, it was totally Ella’s day. Everything was about her, including all the pink,” says Simon. “Lots of the people who were there still follow Ella’s progress on our Facebook page. It has been an incredible story.”
This year’s classic supported 18-year-old Courtney, whose palsy did not start to manifest seriously until she was 17. The spasticity in her legs had gotten to the point where it was impossible for her to stand or walk independently. Without fundraising help, she says, her future “would have been a life in a wheelchair.”
Similarly, after having her surgery last year, this fall Ella took seven independent steps for the first time—an enormous milestone in her progress.
“I cannot overstate how huge Structure Tone’s golf event is in the amount of funds it raises toward the process. For someone like Courtney who’s had all of this happen within the year, without this event she wouldn’t be going to America for the surgery, “Simon says. “It takes so much pressure off of it. And all Structure Tone asks us to do is show up and enjoy ourselves.”
Many thanks to all the Irish subcontractors, clients and consultants who continue to support this event every year, and to Structure Tone’s amazing Dublin team who organises and plans it so successfully.
For more information on the golf classic, contact James Reidy at firstname.lastname@example.org.
Photos courtesy of Mark Reddy.