This month I would like to feature a family whose lives were directly impacted thanks to the generosity of the Elks. Gracie Robinson was just a baby when it was learned that she had a rare condition called Protein-losing Enteropathy (PLE) which is a significant complication of complex congenital heart disease in children. In this condition, the normal vessels (called lymphatic vessels) that carry fat and proteins from our diet into the circulation make abnormal connections back to the intestinal cavity. When this happens, there can be significant spillage and loss of essential blood proteins into the stool. Over time, PLE leads to malnutrition, an inability to fight infection, and if not corrected, early death.
In Gracie’s case, innovative surgical approaches were required following her first 2 open heart surgeries (she has had a total of 3) to treat intractable fluid draining into her lung cavities. As a result, her lymphatic vessels found a way to connect with the intestines to spill vital proteins into her stool. Before the age of 5, Gracie underwent multiple medical procedures, surgeries, and treatments with hopes of slowing down the loss of protein. Those interventions only worked for a short time until the doctors and researchers at the Steele Children’s Research Center decided that something new had to be done. Their expertise and interventions led to Gracie becoming the first patient with her condition to undergo a new procedure that blocked and re-diverted the abnormal lymphatic vessel connections. This surgery saved her life and is now used to save others like her.
These days, Gracie is a vibrant, active 8-year-old who enjoys all aspects of life and then some! She is a master of the monkey bars (so much so that there are calluses on her hands), an emerging gymnast, and a talented soccer player who has conquered all of the obstacles given to her. Her energy and lust for life is something that we should all aspire to possess.
Gracie is the reason why we continue to give and contribute to the innovative research and clinical care being done at the Steele Children’s Research Center. Without our contributions, the surgery Gracie received may never have been presented as an option for her. Her family expressed the sincerest gratitude I have ever felt from anyone. I met Patrick, Gracie’s dad, by chance when he was fixing the lights in our offices. Not only did he embrace me as a gesture of gratitude towards each and every Elk, but he asked what he could do for us in return. Gracie IS our return. She is proof that the benevolence of the Elks goes much farther than the name of a pediatric clinic or the presentation of a large check; the benevolence of the Elks has saved lives and given children the ability to live life to its absolute fullest. Gracie, and others like her, depend on you to give them hope. Let’s show them how much more we can do!
I’ll leave you with a direct quote from Gracie: “I want to thank all of the Elks for saving my life and saving the lives of my friends from the hospital”