Diane and I, and our family members are of course deeply saddened with Ryan's passing. It has been the most difficult and heart-wrenching time of our lives. We are, however very grateful for the support and kindness that has been apparent throughout this ordeal.
We are ever so grateful for the hard work and incredible care Ryan has received from Children's Hospital of Pittsburgh from the day after his birth until his final moments. While we did have the option of bringing Ryan to our house, we had decided that because we had no real attachment to the house (we had just moved in last December), and because we didn't really have any friends or family in the area, it was better for him to spend his remaining time at CHP. Because we have spent so much time there with him, it was really the people there that we were closest to.
We are also grateful for all of the people who supported Ryan and our family, whether it was having a banana split in his honor, or just some kind words and messages. We are all amazed at the INCREDIBLE number of people who were touched by his story. We are also thankful that the media has taken an interest in spreading the news of Ryan's story and thereby helping us spread the word about Congenital Heart Defects, Down Syndrome and Pulmonary Hypertension. It is important to us, as well as other parents and children who have spent time here that people know and understand how emotional and difficult it is to spend time watching your child go through so much. It is also important for people to realize that sometimes a child may not come home from the hospital. We certainly did not ever expect to come home without Ryan when he was born. It is not something any parent ever expects.
This experience has given us all a new outlook on life. Every moment you spend with your children, family or even friends is important, because for many, tomorrow may never come.
We are still trying to find a place for Ryan's celebration-of-life event. Once we have established the times and places, we will pass that information on. While we would like to have the event open to everyone, it is important, especially to the children, that there are only people that we know personally at this event as it is of course a very difficult time. We would, however be very grateful if people would write a message to Ryan on a balloon (preferably red if you can), and release it at 8:30 on the night of Ryan's celebration.
Erik J. Roberts