Letter from Mary Forrest and Richard Engel
Dear Friends,
It is unfathomable to us that it has been almost 9 months since our beloved Henry passed away. Words can’t adequately convey the depth of our sadness and how much we miss him. However, we have found much needed comfort from the incredible outpouring of love and support from our community. We can’t thank you enough for your condolences and for making a gift in honor of Henry to the Duncan Neurological Research Institute. Your generosity and commitment to helping children like Henry truly means the world to us.
Henry was diagnosed with a genetic disorder called Rett Syndrome in 2017. He was unable to walk, communicate verbally or feed himself. There were many medical side effects of Rett such as central sleep apnea, dystonia and heart arrhythmia that took a toll on his body.
When we got the diagnosis, we took Henry to Houston where the world-class scientists at the Duncan NRI are now using Henry’s cells to advance treatment for people with Rett Syndrome and MECP2 related disorders.
Despite the immense challenges Henry faced each day, he worked very hard at a variety of therapies, he learned his letters and numbers, he patiently sat through endless appointments. He never gave up. He went to school. He made friends. He was a true fighter. He had the most beautiful blue eyes and a contagious laugh that nobody could resist. He also gave so much love to those around him. We are eternally grateful to be his parents.
Over the course of his almost seven years, Henry touched many lives, and his impact on the world is only just beginning. With your support, Dr.Huda Zoghbi and her colleagues are working ferociously to advance a treatment for Rett syndrome. This will be Henry’s legacy – helping boys and girls around the world live long, healthy, and joyful lives.
With gratitude,
Mary and Richard