By Sandy Rocco, mother of LAM patient Marissa Rocco
Our family became involved with The LAM Foundation in July of 2017. Our 20-year-old daughter, Marissa, was enjoying a day at the beach when she had some chest pain which intensified while walking and when she laid down. We took her to the ER, where a chest x-ray determined her left lung was about 95% collapsed. Despite efforts to correct the problem with chest tubes, she eventually needed surgery. At the same time, a CT scan of her lungs showed multiple cysts in both lungs.
Her surgeon mentioned some of the rare causes of both cysts and spontaneous pneumothorax but told us not to worry because idiopathic pneumothorax is common in tall, thin teenagers. She had surgery and a section of her lung was removed and sent for pathology. The surgeon assured us that there was only a 5% chance the pleurodesis would not correct the pneumothorax.
Although the surgery initially re-inflated Marissa’s lung and she was discharged from the hospital, she was readmitted three days later with another pneumothorax on her left side. This time we took her to The Hospital of the University of Pennsylvania. The night before her second surgery, we got the pathology report that her lung tissue was positive for LAM. Needless to say, we were devastated. As parents, we wanted to do whatever we could for our daughter. Medically, she was in a great place as HUP just happened to have a LAM Clinic. Those first weeks were full of researching everything we could on LAM, and The LAM Foundation was a trusted and valuable source of information.
As parents of a young woman with LAM, it was important to have Marissa’s permission and support with a fundraiser. Marissa, like many LAM patients, does not want LAM to be her identifier, nor does she want pity or for others to feel sorry for her. We had planned on doing a fundraising event around the one-year anniversary of her diagnosis, but Marissa’s other lung collapsed in March of 2018. None of us were up to the task of organizing a large event, but we felt so helpless we needed to do something! After looking on The LAM Foundation website for inspiration, we decided a letter-writing campaign would allow us to both raise funds and also raise awareness, as most of our family and friends had never heard of LAM.
We knew that not everyone would have the means to make a donation, but our letter contained information about how Marissa was affected, the disease itself, and The LAM Foundation. Our hope was that everyone who read the letter could learn about LAM, and they would pass on that knowledge to others. Our letter-writing campaign was successful solely because of the generosity of our family and friends.
We are proud to say that Marissa graduated Summa Cum Laude from Rowan University in May of 2019.
Click here to learn more about how you can fundraise for The LAM Foundation.