Patrick MacNab is a typical, fun-loving, spirited 10 year old at Hillside Avenue School. He
loves to play, loves to be with friends, and has a very loving family. He leads, for the most part, an entirely normal life. Except that if he skins a knee, or loses a tooth, or get a throat infection . . . . as all kids do . . . . there can be real trouble.
Patrick happens to have a rare bleeding disorder, a qualitative platelet disorder. The name is more descriptive than specific because it is a one in a million condition for which there is no specific name. (It is NOT hemophilia, although it sometimes presents as such).
Patrick presented with bleeding issues as a baby, and underwent a long, arduous set of tests to determine his condition. Patrick’s mom, Sue MacNab, remembers, “When we returned to the local specialist we were seeing at the time, Patrick’s hematologist stated ‘I consider myself an expert in my field, but your son humbles me. I don’t know what is wrong with your son.’ “ How’s that for scary?
Patrick was seen at CHOP when he was 9 months old, and continues to follow up there today. He had to wear a helmet until he was 2 years old and steadier on his feet. Patrick will never be allowed to participate in wresting, football, and many other contact sports, since it simply presents too much of a danger for him. He is at risk of suffering from spontaneous nose bleeds that do not stop (at 15 months old, he bled for 6 hours and then had to be given platelets to stop the bleeding).
There are no specific medications for his condition, but platelets transfusions are what are needed when bleeding issues arise. Thus far, at age 10, he has four of those under his belt. Patrick sustained a life-threatening bleed in May of 2008, when ho lost approximately 25% of his blood volume due to bleeding tonsils, and was hospitalized for 3 days. In January of 2010, Patrick had to have his front baby teeth medically removed because of excessive bleeding do to premature loosening. After more than 10 hours of bleeding and 2 hospitals, the bleeding was finally stopped. This past January of 2014, after having Strep Throat, Patrick has a sudden tonsil hemorrhage. 9-1-1 had to be called, Patrick received platelets, and was then airlifted to CHOP where he received more platelets and was hospitalized for 2 days. A tonsillectomy was considered, but it was determined surgery is still TOO risky at this time for him and would be potentially life-threatening. Luckily, his tonsils healed on their own this time. But, clearly, even the simplest of issues can be a major threat to Patrick.
Play Ball for Miracles (PBFM) Charity Softball Tournament was started in 2005 as a surprise for Patrick by friend and neighbor Erin Kelly-McGuinness. When Erin arrived at the MacNab home with an unexpected check with monies raised from the event, the McNabs graciously, tearfully, and gratefully told her that they considered themselves blessed and fortunate enough to adequately provide for Patrick’s medical needs. But they asked her to continue the fundraising in Patrick’s HONOR, so that others could benefit.
The local Play Ball For Miracles event is now approaching its 10th Anniversary. PBFM has raised OVER $90K in the last nine years. ALL of the proceeds go to Children’s Specialized Hospital in Mountainside. Sue explains, “A little over a year ago, we had the wonderful opportunity to join PBFM in being honored with a hospital room in Patrick’s name… but the best part was to get a tour of the hospital and see the wonderful things they are doing with the children there.
I have no doubt you know families that have received services from Children’s’ Specialized Hospital in Mountainside, but what you may not know is that there are many children who live in the hospital for medical reasons and more heartbreaking than that is MANY of the children do not have the familial support they need. It was a humbling experience…although Patrick’s condition is very difficult (and scary) at times, he is blessed to have the best care available and has a warm loving home of family and friends to come back to. PBFM was started ‘for’ Patrick… and although it is now in honor of him… the benefits of what Patrick has experienced far outweigh any financial donation our family could ever receive.
This year’s Play Ball For Miracles promises to be a fun family day! The Game Truck will be there, as will Sparky – the official mascot from the Somerset Patriots, balloon artists, stilt walkers, and much more fun! It will take place on Saturday, May 3rd, at Warinanco Park in Elizabeth. This is a one-pitch, slow-pitch softball tournament, with divisions for men, women, and co-ed teams. Teams must register by April 26th., and can do so at http://www.leaguelineup.com/welcome.asp?url=playball4miracles . Those who don’t play ball can still help out by donating, supporting teams, or “buying a ball.” (see attached form 2014 Buy a Ball)
This is a wonderful way to have a lot of fun, while doing something worthwhile for a family who truly needs and appreciates the help. There are so many day to day things we are blessed enough to take for granted. And there are so many young children who will never have the opportunity to take those little things for granted. This is a great way to give, and to give thanks. It’s a great way to bring community together.