“We were lucky in the sense that we knew to be looking for signs and symptoms as Rolfe’s father had Marfan Syndrome,” says Tasha. “Getting Rolfe’s diagnosis was pretty simple, as he had physical symptoms that made diagnosis easier to make so early. Not everyone with Marfan is tall and thin, but Rolfe was 23 ¾ inches at birth and weighed 10 pounds.”
“At first, it was really overwhelming. I wondered, ‘How will I ever learn everything about his condition? What will his future look like?’ I had an almost grieving period for what I had envisioned life would be like,” says Tasha. “But I also had determination and a feeling of empowerment. Another Marfan Mom told me to relax. She told me that I would become an expert in my child’s condition, often times educating doctors on this uncommon condition. That said, I haven’t had to educate Dr. Sallee – he’s amazingly informed!”
A Family’s New Normal
“Rolfe has had 4 surgeries so far,” says Tasha. “A left lens removal, left lens muscle correction, an aortic root replacement (valve sparring, David’s procedure) and a modified Ravitch for pectus carinatum.”
“I remember that when I was little and wanted to play with Rolfe, he’d have to sit down a lot and take breaks,” says Lillian. “He couldn’t run like I could. And sometimes he didn’t feel good or was tired. I didn’t understand. But we found quiet things to do and ways to hang out that weren’t going to make him tired.”
“I’ve had to learn how to balance time, especially individual time, between Rolfe and my two other children, Lillian, who is 12 and Noah, who is 1,” says Tasha. “It took time and maturity and for Lillian to understand that Rolfe wasn’t getting more of my time because we were having a party – we were at doctor’s appointments or in the hospital.”
Life with Sibley and Surgeries
“To feel like you’re a part of the team and not having to educate or teach doctors about Marfan is amazing! We’re a military family, so I find a whole new team of specialists every two to three years. Dr. Sallee and his staff have been amazing, from IEP help, hospital homebound, his surgical team and the nurses. They become like family. You cannot put a price on compassion, willingness to learn, patience and love,” says Tasha.
“I was so relieved to finally have my aortic replacement done. It was something I had dreaded for years, and it definitely a lifted weight from my shoulders,” says Rolfe. “Another great moment was the feeling of seeing my new sternum. It caused so many issues medically but also with my self-esteem and social life. Seeing my new, normal looking chest, I was so happy I cried.”
“Sibley’s staff was great,” says Rolfe. “They kept me occupied, informed and happy during my stays and visits. The doctors, nurses, the janitorial staff, cafeteria staff. Everyone cared about me and how I was doing.”
Supporting and Being Supported By the Marfan Community
“I serve on the Teen Council of the Marfan Foundation. It’s been cool to help other kids like me. The best thing about the Marfan Family Conference is how out of place the rest of my family looked! At 6’ 10”, I was normal height and they were short!” says Rolfe. “You can’t let fear overwhelm you, even though there will be scary moments. When I got older, I had a sense of fear of the unknown and what could happen,” adds Rolfe. “But also of relief because things got better the more I learned about Marfan.”
“There are great moments too, like being able to hold the last piece of chocolate above your sister’s head. Connect and don’t be afraid to ask for help,” says Rolfe. “Knowing I am not alone and I have people I can talk too with the Marfan Foundation’s teen council. They, along with family and friends, kept me positive when I was scared about surgeries. They’ve helped me to see the positive in every situation and assured me that it’s not about what I can’t do but rather what I can.”
“Just because you can’t see the problem doesn’t mean it isn’t there,” says Rolfe. “There is a lot of misinformation online, so use a trusted source like Marfan.org. I DON’T PLAY BASKETBALL! Assumptions can be hurtful so think before you speak,” he continues. “I am traveling this summer and attending the Marfan Family Conference in California. I have an interest in Physics and plan on narrowing down a list of colleges next year,” says Rolfe.
“People with Marfan go on to become successful adults,” says Tasha. “And not everyone is going to fit a Marfan mold. They are all sizes, shapes, fitness levels and races. Rolfe is a normal teenager who’ll be getting his driver’s permit soon, so I’ll need to see a cardiologist more than he will!”
They’ve helped me to see the positive in every situation and assured me that it’s not about what I can’t do but rather what I can.