Just a Normal Family... in a rare world
Credit Union of America just wrapped up its 13th golf tournament in support of the local Children’s Miracle Network Hospital (CMNH). Over the past 13 years CUA raised over a half of million dollars for CMNH to help sick and injured children and their families in Kansas. You see, CMNH takes over where insurance stops. They don’t judge by income or any other status. They give what they can to help families live a “normal” life in the abnormal world they find themselves in when a child is ill. You’ll routinely see CMNH help with prescription costs, travel to specialists, and durable equipment.
Each year CUA hosts a CMNH family on one of the greens so the golfers can meet and visit with a CMNH family. This year they met Vincent Manning. Vinny has cystic fibrosis. A normal young boy, with hopes and dreams of the man he’ll become, but faced with challenges of a not so common body that needs some assistance. Vinny happens to be the Kansas CMNH Ambassador Child this year and represents CMNH at many activities and fundraisers, sharing his story with everyone he meets. His dream is to create comics for Marvel.
So, a little background on the tournament. We aim for the round of golf to be fun, relaxing, and filled with fellowship. With the tournament being the kick-off event for the big PGA Wichita Open, golfers enjoy a course that is in pristine condition as it awaits the pros that will arrive in a few days. CUA has great partners at the Wichita Open with Roy Turner, Wichita Open Director and Debbie Burch, Assistant Director. They’ve led and tolerated many CUA non-golfing marketers in creating a very successful event. Most of our sponsors and golfers have participated all 13 years. We are truly thankful for everyone’s support. It’s important to Credit Union of America that all involved know how CMNH truly makes a difference in the life of a Kansas family. Accordingly, at the post-tournament luncheon CUA invites a CMNH family to share their story with the golfers and sponsors.
This year Tiffani and Chuck Ulrich brought their two boys, Micah (8) and Max (6). Max is their “Father’s Day Baby”, born on Father’s Day and celebrating his birthday, again, on Father’s Day this year. Max was diagnosed with GNA01. Max is 1 in 100 children in the world dealing with GNA01. This condition affects every muscle in his body, has required multiple surgeries, and even a feeding tube. Max spends most of his time in a wheelchair. But hearing Chuck talk about “his boys” gave the audience a different perspective. They’re just a normal family. But their world is rare, the world of GNA01. Even daily activities are a challenge, but they love each other, and it showed. Micah is ever so attentive to his brother, patting his arm, stroking his head, whispering to him. CMNH has been able to give the brothers some help in having fun together. The first CMNH gift was a tricycle that could properly support Max and the therapeutic benefit extended not to just Max, but also to big brother Micah. Now the boys had something they could do together! And just recently CMNH helped with a flotation devise that features a stabilizer around Max’s neck, allowing the boys to play in the pool together. Normal boys, doing normal summer activities, in rare circumstances. Chuck mentioned that the tricycle was a first, allowing he and his wife to see their boys playing together and “it lights up their world”. He was referring to the effect the tricycle had on the boys, but you could tell it also lightened Chuck and Tiffani’s world as well.
The Ulrich family also spoke at the tournament two years ago, when Chuck’s message was for everyone to look at what they CAN do, instead of what they can’t. Tiffani says, “It’s a concept that has played such a vital role in the health and well-being of our lives over the years.” And that is obvious when you meet them. Not an inkling of self-pity. This year Chuck shared that “CMNH helps us be part of the community.” He then reminded us that each one of us is special or unique in our own way. Drop any judgments or pity, because by taking their own advice they don’t live in that world. And if you see them, Chuck invites you to stop and say hi. Ask the boys what they’re doing for the summer. Talk to the boys and the parents like any other neighbor you might see. Because that’s what they are, our neighbors. And parents, like most parents, doing what they need to do to raise their family safely and lovingly, with a little help from their CMNH friends. The Ulrich family is unique and normal, they just happen to live in a rare world.