Brenda E.

Child, FSGS

At the age of two, my daughter Brenda was a happy, chubby, bubbly toddler. She was the light of our lives and nothing could bring her down. One day I got a call from the daycare center saying that Brenda seemed uncomfortable; she was having trouble getting around and her stomach seemed enlarged. I immediately called the pediatrician, who told me to go to the ER.

We arrived at the ER and were told several hours later that Brenda had Nephritic Syndrome, and we needed to follow up with the Renal Department at Children’s Hospital Boston the next day. I called Children’s the next morning and they told me to come right in. By the time we arrived that morning, Brenda was lethargic and not her happy, bubbly self. We were admitted and they began to remove some of the fluid from her. At this point, I was scared and wondering how I could have missed this — how did I not realize that she was sick? How did I miss this in my beautiful little girl? I was scared and heartbroken for her.

They removed eight pounds of fluid from her during that time at the hospital. Eight pounds from a 2-year-old is very substantial, and, again, I could not understand how I missed this. She looked like a different kid, and was back to a happy, bubbly, non-stop toddler. We went home with a ton of instructions and how to’s and when to’s. It was short lived, because within a week we were back at the Children’s Hospital to have more fluid removed. We spent more time at the hospital than we did at home for the next several weeks. We could not get her stabilized. As soon as we would get home and try to resume normalcy, we would be back at the hospital. She was so sick, and my husband and I were beside ourselves; we just wanted our happy baby back.

They did a biopsy and our fears were confirmed — Brenda had FSGS. For the next year we were at Children’s Hospital more than we were home. My family stepped up and helped. My mom would be with me and Brenda at the hospital while my husband would try his best to keep my son’s life a normal as possible. Our son Matthew was 10 when this all started with Brenda, and he was even more anxious than her. He had a really hard time with everything going on. He still had to be at school while he worried about his baby sister. My husband, my sister, and my dad did a wonderful job keeping Matthew on track while my mom and I would be at Children’s with Brenda.

We graduated from overnights to six-hour albumin treatments in the hospital three times per week. At this point Brenda was almost four, and I will never forget one day when Dr. Somers came to see us during one of her treatments. He said that he wanted to admit her because he wanted to give her another treatment overnight. I was heartbroken, and was trying to be strong for Brenda. My then 3.5 year old took my hand and said to me: “It’s okay, mommy. I will go upstairs to a room and they will make me feel better.” My poor sick baby was comforting me!

It was a horrible time for my family. We were broke because I was barely working, Brenda was so sick, and my son and husband were struggling. When Brenda was four we finally found relief. Dr. Somers found the perfect mix of medication, and Brenda went into partial remission because of the it.

Brenda is now a beautiful 14-year-old. She dances, and while she is not as happy and bubbly as she was at 2, 3, and 4, she is a “normal” teenager, excepting the fact that she has FSGS. She is much more aware of what her future may hold, and that is hard. We are all aware of what her future might look like, but we are living one day at a time and right now, things are good. She is dancing with Paula Coffey Dance Center and has been dancing with their competition team for four years now. This year we are doing the Power of Dance; they raise money for charities through dance. The money raised by Paula Coffey Dance Center this year will be donated to NephCure.

We created a foundation a few years back to help families going through similar situation as ours. What people do not realize is that while parents are trying to get their child healthy again, bills still pile up: the mortgage needs to be paid, the electricity needs to stay on, food needs to be purchased. The Brenda Easter Foundation will match the donation from Paula Coffey Dance Center to NephCure. I appreciate what NephCure is doing —keep researching to find a cure so my beautiful daughter may not ever need a transplant!