Gemma gets a 'Spoon full of sugar'
Every parent dreams of having a healthy child, who will spend his/her childhood at the park, at the pool, at the zoo. For some parents, their hopes and dreams are instantly changed when their child is diagnosed with a life-threatening illness. Now, their child is spending countless hours in doctor’s offices and hospitals. Unfortunately, this was the case for Gemma Nessler’s parents when she was diagnosed at a young age with a unique, genetic disorder. Her disorder is so rare that it does not even have a name. Gemma is missing proteins on the 8th chromosome. Gemma also has Microcephaly, which is a condition where the head is smaller than normal. She does not have a pulmonary valve on her heart and she has already had one open heart surgery. Gemma will have to have a lifelong valve replacement and at least one more heart surgery. Gemma’s parents are hopeful that, with continuing medical advances, Gemma will still have a long, normal life. Throughout this experience, her parents have learned to “live in the moment. Although we have our ups and downs with the illness, we try to enjoy every day,” shared Gemma’s mom, Krista. To help the Nessler Family live in the moment, A Special Wish Foundation- Dayton Chapter provided Gemma and her family with an unforgettable experience to go to Walt Disney World in Orlando, Florida.
Gemma’s family was referred to A Special Wish Foundation- Dayton Chapter by her cardiologist at the age of 5. The family decided to wait until Gemma was 6 to go on the Wish trip. When the time finally arrived, Gemma couldn’t wait to go to Walt Disney World. Her mom shared, “She’s a huge roller coaster junkie.” Her favorite rides at Walt Disney World were: Thunder Mountain, the Seven Dwarfs Mine Train, Splash Mountain, and Test Track. Gemma loves interactive rides with lots of twists, turns, and fun things to look at, so she was especially fond of Splash Mountain and Test Track.
Aside from her time at Walt Disney World, some of Gemma’s most memorable moments were spent at Give Kids the World Village. Give Kids the World Village is an 84-acre resort with 166 villa accommodations for families to stay in while on Wish trips. The village is equipped with a Castle of Miracles, Julie’s Safari Theatre, Marc’s Dino-Putt, Happy Harbor Fishing Pond, an interactive water park and wheelchair-accessible pool, a train to transport families around the village, an ice cream parlor, and so much more. Gemma is still talking about having “ice cream for breakfast,” Krista shared. Gemma loves to swing and swim, so the family spent a lot of time in the park at the Village. Gemma is also still talking about riding the “choo-choo train” at the Village. Gemma also enjoyed meeting Santa and Mrs. Claus during breakfast at the Village. Krista stated, “She loved every bit of the attention. They do a great job of making the kids feel extra special.”
When a child is diagnosed with a life-threatening illness, families can become consumed with daily doses of medication, strict routines of diet and rest, monthly or even weekly appointments, and a never-ending fear of what the future may hold. A Special Wish Foundation- Dayton Chapter gives families an opportunity to enjoy time together and to momentarily step away from the stresses that life brings. A Special Wish Foundation- Dayton grants approximately 50 wishes a year to children, just like Gemma, in the Dayton area.
Thank you to the Wright State University Boonshoft School of Medicine Pediatric Interest Group and the Neumeister Family Foundation for sponsoring Gemma's Special Wish!
Please join ASW today by making a donation (https://www.aspecialwishdayton.org/donate-now) and help grant the Special Wish of a local child battling for their life. All funds raised stay here in the Dayton Region benefiting local children.
A Special Wish Foundation-Dayton is the only wish granting organization located in the Dayton region and has been making special wishes come true since 1983. For more information on how you can be a part of granting a local child’s wish, please visit aspecialwishdayton.org or call 937-223-WISH (9474).