Beside pro bono, learn issues of Marfan syndrome

By Ramona M. Sullivan

My original idea for this month's Spotlight on Pro Bono article was to discuss the immeasurable impact that pro bono attorneys can have in an individual's life, and to highlight the work of Richard S. Kling and Susana L. Ortiz.

These Chicago-Kent College of Law faculty members worked for years on behalf of an Edgar County man who was released in January after spending 20 years in prison.

But then I remembered that this is February. And for deeply personal reasons, I must take the opportunity instead to bring your attention to a life-threatening condition that could literally be killing some of you or some of the people you love as you are reading this.

You probably know that February is the month to promote heart health awareness and celebrate organ donation. But you probably don't know that February is also Marfan Syndrome Awareness month.

It's actually a pretty safe bet that most of you don't know anything about Marfan syndrome. I didn't know anything about it either, until my husband Lionel was hospitalized and finally diagnosed when he was 27.

We should have learned about it sooner. My husband went to an emergency room once when he collapsed with sudden chest pain. He asked several different eye doctors for help with his left eye that could not see. He once asked at a clinic about concerns he had with a racing, irregular heartbeat.

He went to a doctor shortly before the hospitalization, looking for help with breathing difficulty, profound fatigue and nausea. But years passed and several doctors missed the opportunity to diagnose his problem.

When Lionel ended up at St. John's Hospital in Springfield, a doctor took one look and was sure that the underlying problem was Marfan syndrome. Unfortunately, by that time his untreated cardiovascular problems were overwhelming.

Doctors performed emergency surgery to replace the aortic valve and repair the aortic arch, and to successfully manage Lionel's heart failure for a while with medication, diet and cardiac rehab.

Then, when Lionel's' heart could do no more, a successful heart transplant was performed - without any close competition, that was the most amazing event I have ever been a part of.

But despite the excellent treatment he received after he was finally diagnosed, an aneurysm in Lionel's descending aorta ruptured and killed him when he was 31 years old.

Testing has recently confirmed that one of our children has Marfan syndrome. The ticking bomb in my little girl's chest doesn't terrify me the way you might think it would. Her cardiologist can monitor her condition.

With proper treatment, I believe she can live to grow just as old as the rest of the kids in her class. But without the diagnosis and treatment, Marfan syndrome would kill her while she is young, just as surely as it killed her father.

We have a whole extra day this month. Please spend some of that time at www.marfan.org to learn about Marfan syndrome.

And please consider volunteering the time left in your extra day to your local pro bono program.

• • •

Ramona Sullivan, an attorney with Fruin & Kash in Paris, is president of the Edgar County Bar Association. She serves on the ISBA Committee on Delivery of Legal Services.