When you’re a parent of a child with a chronic medical condition, such as sickle cell, it can be overwhelming and all consuming. But, with the right medical team as a support system, it can help alleviate some of that fear.

Meet Marcus. He’s one of the 100,000 Americans living with sickle cell disease.

“As a parent, it’s difficult to watch Marcus live with sickle cell,” shares Ashley, Marcus’ mom. “Early on, Marcus was hospitalized every other month, sometimes twice in a month, because of pain crises.”

Sometimes, those pain crises prevented Marcus from participating in fun activities like birthday parties, playdates, and even Halloween.

“Marcus has never celebrated Halloween. Every Halloween he is in the hospital,” shares Ashley. “Marcus usually has a rough time as the seasons change because sickle cell can be impacted by the environment. When the weather changes, when it’s getting hot or cold, when it rains – Marcus is impacted.”

While sickle cell has proven to be a challenge for Marcus and Ashley at times, it is because of the support of their team at La Rabida that they have hope.

“It’s very important to have a strong support system – including everything from great doctors, pharmacies and hospitals,” shares Ashley. “I like that Marcus has everything that he needs in one spot. I don’t have to travel different places and see a bunch of different people,” shares Ashley. “He feels comfortable here. He actually request to be admitted and hang out with the Child Life Specialists – he knows who he wants to see. He has the most fun at La Rabida.”

“Marcus has been at La Rabida since the very beginning of this journey and we wouldn’t want it any other way.”

This story was featured in the December 2019 issue of eCurrents, La Rabida's monthly newsletter. To view the December issue of eCurrents, click here.