For Richard Ehst, nothing is more important than family. The Pennsylvania-based businessman has 11 grandchildren, ranging in age from 12 months to 20 years. His grandson Will Hummel holds a very special place in his heart. So much so that the 10-year-old boy recently inspired Mr. Ehst to make a $2 million gift to support research at Children’s Hospital Colorado.
“Will is a wonderful kid with a great sense of humor,” says Mr. Ehst fondly.
Mr. Ehst tells about his grandson’s love of sports. How he can do a spot-on Jim Carrey impression. How Will is your typical, active, fun-loving boy – a typical boy who happens to have Homocystinuria, a rare genetic condition that makes it extremely difficult for the body to process protein.
“Will can’t have more than 15 grams of protein a day,” explains Mr. Ehst. This requires Will to maintain a vegan diet, which includes many low protein medical foods and a daily regimen of metabolic formula and medications. “Any more protein than that and he risks developing blood clots and other complications.”
One of the lucky ones
Mr. Ehst says that Will was one of the lucky ones. Because Will’s parents, Tara and Chris Hummel, opted to do an extended newborn screening when Will was born, he was diagnosed with Homocystinuria at just two weeks old. As a result, the family immediately initiated a strict low-protein diet.
Without proper treatment, Homocystinuria can lead to toxic levels of amino acid byproducts in the body. The condition can cause serious health problems like strokes, brittle bones, developmental delays and dislocated eye lenses.
Currently there is no cure.
But with the help of his “extraordinarily caring parents,” Will has managed to avoid many of the symptoms of Homocystinuria. Due to the incredible care Will received at Children's Colorado by nurse Cindy Freehauf, dietician Laurie Bernstein and others, Will’s parents learned early on the tools they would need to care for Will's unique needs. Will's mother Tara was even inspired to go back to school to become a nurse herself.
Although the risk of complications is ever present, Mr. Ehst says Will doesn’t let his illness affect him. He is a talented athlete. He is performing well above his grade level. He does all the things a “normal” 10-year-old boy does.
By all accounts, Will is thriving.
A game-changing gift
Motivated by a desire to find a cure for Homocystinuria, Mr. Ehst has pledged $2 million to fund the groundbreaking research of Dr. Kenneth Maclean at Children’s Colorado. The generous gift will establish the Ehst-Hummel-Kaufmann Endowed Chair in Inherited Metabolic Disease.
Dr. Maclean and Children’s Colorado are leading the way in research for new treatments for Homocystinuria. Will’s family hopes that this infusion of funding will lead to new advances that give Will and others like him hope for a healthier future.
Dr. Maclean first formed a relationship with the Hummel family shortly after Will was born in Colorado in 2005. Although the Hummels have since moved to Pennsylvania to be closer to the rest of their family, they have supported Children’s Colorado ever since.
“Between Dr. Maclean and the extraordinary competence of the University of Colorado Hospital and Children’s Hospital Colorado teams, it seemed to be the right place to find a cure for this metabolic disease,” explains Mr. Ehst. “That’s why we decided to make this gift. Children’s Colorado is an amazing place.”
Above all, Mr. Ehst hopes that his gift will help Will to continue to lead “a normal life.” Mr. Ehst says that his entire family is committed to doing whatever it takes to help his grandson.
“There is nothing more important than the life of a child, and we’re all in this together to try to make a difference for this young man,” says Mr. Ehst. “And maybe as a result of this gift, there will be others who can benefit from this research as well.”