The Pittsburgh Penguins had some very special guests Tuesday for their 1-0 victory against the New York Islanders at CONSOL Energy Center.
Seven children and their families were given a VIP evening by the Penguins as they met head coach Dan Bylsma, hung out with NHL officials in their locker room and had their very own suite to watch the game.
Mary Beth Bylsma, wife of coach Bylsma, organized the event through the Penguins organization for families involved with the Immune Deficiency Foundation (IDF). The illness is a rare one, yet over 250,000 people have been diagnosed with the disease in the United States.
There are different forms and severities of the illness, with Dan and Mary Beth’s son, Bryan Bylsma, suffering from the selective IgA strain of immune deficiency.
“The IDF offers a world of information for us parents who have never heard of this,” Mary Beth said. “It is a illness which is manageable for many children and adults, but unfortunately for some it is more severe, it is life compromising.”
Lisa Cross, mother of Roy Cross III, who suffers from an immunodeficiency disease, was delighted that her son and her family were able to watch a game in such a style at CONSOL Energy Center.
“It is a great thing for the Penguins to invite us along with Dan Bylsma and his wife,” Lisa said. “It is a very nice way for the families to get together, have some fun and get to watch a great team.”
When they discovered that their own son suffered from the illness, the Bylsmas became much more aware that there were others out there as confused as they were about immunodeficiency diseases.
“The website is a wonderful opportunity to find out more not only about what my son has, but that there are so many other cases out there,” Mary Beth said.
The disease is often very hard to detect at a young age, as the symptoms are similar to that of common illnesses such as a cold. Many families who are a part of the IDF have spent countless hours in hospital hallways and sitting by the bedsides of their suffering children, not knowing what was wrong the whole time. Most children are diagnosed with the disease between the ages of 5-10.
“When I came into a spot where I could say to the Penguins family, hear this story, this is my own family’s story, there are other people out there who are suffering too,” Mary Beth said. “Let’s celebrate these children tonight and have a special night where we forget about being in a hospital or worrying about medication.”
Mary Beth came up with the notion to link the IDF event with the National Hockey League Officials Association (NHLOA).
The NHLOA has their own program to help children in need and their families, known as “Zebras Care.” This links in with the IDF’s own program, “Think Zebra,” which encourages doctors to think outside the box when diagnosing young children.
Scott Driscoll was one of the linesmen for the game, and he spoke of how reaching out to families in need is so important to the NHLOA.
The special guests and their families spent a lengthy time questioning Driscoll and his fellow referees before heading towards the ice to watch the Penguins warm up.
“We try to give the kids a reprieve from what they are going through,” Driscoll said. “It’s a realistic situation that they are in, but when they come here they are happy and smiling and it’s a dream come true for them to come to watch a hockey game.”