Honoring Alyssa’s Spirit
Why We Rally: Aly’s Story
As told by Lynn, Aly’s Mom
With four healthy, young boys we never really gave a second thought to Children’s Hospital of Wisconsin. All of our boys received great care from Dr. David Lautz, a Children’s Medical Group pediatrician, but that was the extent of our experience.
Then our Alyssa came along. As our fifth child and only girl, she brightened our world in countless ways. She introduced us to things we hadn’t really discovered yet, like princesses, playing house and the colors pink and purple. Not long after she was born, it became clear that Alyssa had some health issues that were unique and so, through her, we also discovered just how special Children’s Wisconsin really is and how fortunate we are to have it right in our own back yard.
Alyssa was born in September 1988 with clubfeet. We were referred to the orthopedic clinic at Children’s for casting. It was there that we met Dr. John Thometz who suggested, after evaluating Alyssa’s bone structure and our family’s history of cardiac issues, that there might be more to her condition than we first thought. From there we were referred to a genetic counselor and, ultimately, to the heart center. Alyssa had an echocardiogram, which revealed a small opening in her heart that needed to be repaired. By the time she was six months old, she was diagnosed with Marfan syndrome (a genetic connective tissue disorder that affects the heart, aorta, eyes and skeletal system) and before even celebrating her first birthday she underwent her first heart surgery.
Over the next fifteen years, we spent a great deal of time at Children’s where Alyssa underwent numerous surgeries and treatments to counteract the affects of her condition. She had an ECHO every six months to monitor her heart and aorta. She battled a number of orthopedic issues and had several surgeries to correct the problems they caused. She also made periodic visits to the ENT, eye and allergy and asthma clinics. You could say Alyssa was a “regular” at Children’s. And while some kids may not have enjoyed that status, she loved it! The doctors, nurses and staff knew her and would welcome her as we walked down the hallways. It wasn’t uncommon to hear a, “Hi Alyssa! How are you?” as we made our way to appointments. Children’s was a comforting place for her; a second home of sorts. The people there were like family. Drs. Michele and Peter Frommelt at the Herma Heart Center. Dr. Kevin Kelly at the asthma and allergy clinic. Dr. Mark Ruttum at the eye clinic. Dr. David Beste from ENT and all of their staffs knew us so very well and were always going above and beyond to help us navigate through new, and sometimes scary, territory.
Alyssa passed away in June 2005 at the age of 16 from complications related to Loeys-Dietz syndrome, a connective tissue disorder that was first identified that same year. Loeys-Dietz is similar to Marfan’s with some distinct differences, which helped to explain why Alyssa’s symptoms and issues never completely fit the Marfan’s diagnosis. Brigg’s &
Al’s Run & Walk for Children’s was always important to Alyssa, who first participated as a Children’s Champion. There were some years when she was too weak to walk, but she was always there sporting her infectious smile. Happily, there were a few years that she walked and she was so proud of herself for making it the entire way!
It was important to us that we carry on the tradition of participating as a way to honor Alyssa and support the institution that provided her with such exceptional care. In 2005, we created “Rally for Aly,” a team of loving family and friends who run or walk with a distinct purpose and motivation. In fifteen years, Rally for Aly has raised more than $188,000 and become one of the largest community teams to participate in the event. Each year we aim to have more team members and raise more money because we understand the impact it has. We raise pledges through the donation web site, but we’ve also gotten creative and found other ways to raise money, like our bracket challenge and beloved Oktoberfest event at Leff’s Lucky Town. Generous family and friends have organized rummage sales, car washes, movie nights, silent auctions, lemonade stands and fundraising parties to benefit our team. We are extremely proud of the work we have done and know Alyssa would be too.
Our experience doesn’t end there, however. In many respects things have come full circle for our family. In 2007, our son Andrew underwent surgery for cardiac complications. He and his two kids are now patients at the Herma Heart Institute. The team there has provided exceptional care to all of them
and has
helped our other sons explore and understand the genetic implications of Loeys-Dietz syndrome. We now have more knowledge about the syndrome Alyssa battled. The money and research is helping us make great strides in assisting other families who are facing this same situation.