The Reid Family went to Washington, D.C., to advocate for children's hospitals.

A family of advocates

It was 3 p.m., and I was walking to my 4-year-old son's pre-school in Cambridge. It was the perfect place for Amiel—small class sizes, a diverse population of children and well-trained teachers with an unquenchable thirst for teaching and nurturing. That morning, everything seemed fine; I brought Amiel to school and hung around for a little while, just to savor the last few minutes of the morning together. I kissed him goodbye and all seemed well.

A mere five hours later, I walked in to find Amiel no longer smiling and energetic. He looked almost grey; his eyes had a yellow tinge and he seemed lethargic. This was such a stark contrast from the morning. Amiel was sitting down, not stirring at all, while his peers busied themselves with chatter and play. He looked up, made eye contact and extended his arms, signaling he wanted me to pick him up. When I did, it was clear why he sat so still. His small body was ablaze with fever. After I spoke with his teacher and she tended to Amiel, I called his pediatrician, Gregory Young, MD, at Children's Hospital Boston.

I've known Dr. Young for eight years. A family-oriented pediatrician with a gentle demeanor, he always spends time educating our family on whatever health complications that arise. In our case, there have been three big issues: Amiel and his big sister, Damali, both have sickle cell disease, and Amiel's older brother, Menelik, has chronic asthma. When I called Dr. Young, I knew he would be calm, competent and reassuring. He listened attentively and then in the calmest, most reassuring voice, told me to bring Amiel straight to the Emergency Department (ED). He told me the ED would be expecting us and that he was going to call Ellis Neufeld, MD, a hematologist. We had met Dr. Neufeld when Amiel was 2 (he'd been diagnosed with sickle cell disease as an infant). When we arrived, Amiel's situation was worsening. His stomach was hurting and he was having trouble breathing. He met us and took an X-ray that showed that Amiel's lungs were completely filled with fluid, as though he'd had pneumonia for a long time. Dr. Neufeld told us Amiel was having an acute chest attack, which meant he was having a sickle cell crisis in his lungs.

He explained that the most efficient way to interrupt this cycle was to give Amiel an exchange transfusion—in other words, remove a percentage of Amiel's red blood cells that were misshapen and replace them with cells that are normal and round. This was something we'd learned about earlier at one of our appointments, but I hadn't expected Amiel would experience this, since his older sister never had anything like this happen to her. Even though I have two children with sickle cell disease, I never expected them to experience symptoms so differently.

Despite all of the fear that this day and the ensuing days and weeks brought, we walked away from Amiel's crisis feeling fortunate. We had a dedicated clinician and researcher as our doctor. And since that day—and to this day—Dr. Neufeld has continuously taught me how to understand and manage the disease in my children, and has taken great pains to involve me in their care and expose me to new discoveries and the latest research.

Both Amiel and Damali have benefited from such research. When Amiel was 7, he began taking part in a clinical trial of a cutting-edge drug called hydroxyurea. Because we were part of a study, the medication was available to us at no cost. Had it not been for this, we would have never been able to afford it. This medication changed Amiel's life. We exchanged frequent hospitalizations and life-threatening attacks for simple, infrequent blood tests. Amiel, who's now 14, remains on the medication today (as does Damali) and has not had an acute episode since he began taking it.

Our family has been inspired by our experiences and we feel a profound sense of wanting to share the gifts and knowledge we have received. We've become a family of advocates and strive to have a positive impact in the lives of families affected by chronic illnesses, like sickle cell disease. We have joined support groups and a consumer advisory board, and have even taken our family to Washington, D.C., with members of Children's, to speak with lawmakers about the importance of children's hospitals. In June, we participated in the National Association of Children's Hospitals and Related Institutions's Family Advocacy Day and spoke with congressional staff and lawmakers about the importance of continued support and funding for children's hospitals, continued education for doctors and support for research. I must say that without these three things, three of my children would not be with me today.

To Amiel, the reason why Family Advocacy Day is important is that he was lucky to have doctors and parents who worked so hard to understand the health care system, as well as a physician who could bridge the gap between the clinic and research to save his life. My family feels lucky, indeed. But excellent health care should not be luck; it should be deliberate and available to all.