We, Anna and Chip Umsted, started this foundation to honor our son and the strength our other
5 children have shown since learning of Henry’s diagnosis of Menkes Disease at 5 months old. Since that day in 2002, we have become medical experts by educating ourselves with whatever materials we could find. We read about the specialists in the field. We know the neurologists, the hospitals, the wonder drugs, and the treatments. We know the ins and outs of our son’s degenerative and progressive disease and we hold our breath while Henry moves through the stages.
If it were not for the requirement of a formal education, we could become board certified in neurology, pediatrics, and psychiatry. We have learned that many of our closest friends can't understand what it's like to be in our shoes, and don't even want to try.
We are coping with seeing healthy children the same age everywhere. We endure the holidays with a smile. We have found ways to get Henry to the neighbors' front doors on Halloween, and siblings' school plays. We've pureed turkey on Thanksgiving. And all the while, keep a festive atmosphere for the rest of our family.
We have gotten up every morning since our journey began
wondering how we would make it through another day, and gone to bed every
evening not sure how we did it. We never stop believing in the strength
of our family.
Although Menkes is a disease that will never allow Henry to progress much further, our family still dreams of him scoring touchdowns and hitting home runs and running sprints and marathons. We dream of him planting seeds, riding horses and climbing trees. We hear his angelic voice singing Christmas carols. We wonder what the world will be like when he can sit up on his own. We never stop believing in all he will accomplish as he passes through this world. But in the meantime, the most important thing we do, is hold tight to hold his little hands and, as a family, watch him reach the stars. Our love for Henry and our belief in him knows no bounds.
It
is this spirit that we bring to the Henry Umsted Foundation. We hope
through the Henry Umsted Foundation we can aid others in our situation to know
that they are not alone and that a strong family is the best medicine to
maintain balance in their lives. At the foundation, we seek to invest in
programs where families can take advantage of having a well earned rest.
Please join us to help these families.
