26. April 2012 10:41
Johnny Gonzalez, a bid manager with the Process Automation division here in Houston, was kind enough to share his story about how the Ronald McDonald House at Texas Children's Hospital in Houston helped his family during the illness of his daughter, Amaris:
"My daughter was diagnosed about seven years ago with a very rare disease, Cockayne syndrome, a rare genetic syndrome. There are less than 300 documented cases in the world. It's an accelerated aging syndrome, so their body ages quickly, and as a result, there are a lot of body processes that are not able to function properly. Some children don't learn to walk or talk. The average life expectancy is about 12 years, and she was diagnosed at two.
Because their DNA does not repair itself, children with Cockayne Syndrome are susceptible to many different diseases and sickness. We spent a lot of time in the Intensive Care Unit (ICU) at Texas Children's Hospital dealing with such issues as pancreatitis, severe lung infection, severe pneumonia, anywhere from two weeks to three months, her longest stay.
Right there in the ICU there are a group of rooms that are run by the Ronald McDonald House, where families can stay for free while dealing with their children's medical issues. They have rooms where you can sleep, a laundry room to wash your clothes, a computer room, a lounge room, and a kitchen area. And nearly every night someone is bringing something for dinner, which relieves a lot of the stress around having to go find something good to eat, of not having to spend extra money that you normally wouldn't because you're not home cooking a meal. The refrigerator is stocked with staples and snacks so you can keep going and focus your energy where it belongs, on your child.
You also get to meet and talk to other familes with children in the ICU, share experiences and support each other. We live over 45 minutes away, so driving to and from the hospital every day would have been a real challenge, in addition to not wanting to leave your child in the hospital with no family around. There is an additional Ronald McDonald House near the hospital that supports families who are from out of town, so they can stay there while their children are treated at the hospital.
I am grateful that the Ronald McDonald House was able to provide us with a place that relieved the daily stresses of finding a good meal, a place to get some rest and recharge - the ICU rooms have no bathrooms, no place to sleep - so we could focus on our daughter and being with her during this difficult time."
Amaris Gonzalez passed away in August, 2011