On December 23, 2013 our beautiful granddaughter, Ella, was born. Ten weeks later she was diagnosed with Glycogen Storage Disease, Type II—also known as Infantile Pompe’ Disease. Thanks to a knowledgeable pediatrician, Ella was diagnosed early and treatment began soon after. Young children that go undiagnosed with this disease rarely survive past 18 months. We were informed to prepare for that eventuality. Crying, hugs, and prayers for Ella and her parents gave way to the reality that we needed to do something.
Approximately two years ago our family and our Foundation of Caring decided we would donate to the CHOC Children’s. It is there that a team specializing in glycogen storage studies could take the research further in rare metabolic diseases, like Pompe’. Since then, they have made huge strides in life-changing improvements, not only for Ella, but for many other individuals with any type of metabolic disease.
In discussing Ella’s story with friends, medical professionals, employees, valued customers and patients, a swelling of response has occurred. Many have asked to donate and we are grateful for their support. We began to refer to these folks as our “circle of friends”. On Saturday, September 23, 2017 we are hoping to expand that circle.
We invite you to our home at The Craigmuir Castle for a tour, wine and hors d’oeuvres. Ella and her parents plan to attend so you can visit with them in person as well.
Date: Saturday, Sept. 23, 2017
Time: 3-6 p.m.
Location: Craigmuir Castle
22 North Garfield Avenue
Wenatchee, WA 98801
Please consider joining our circle of friends by donating to CHOC. We extend our gratitude in welcoming you to our home in support of the work and continued achievements made by the metabolic research team.
Kathy and Marc Ball