Two years ago, an active and cheerful nine-year-old named Emma suddenly turned yellow – a frightening time that turned her mother into a research dynamo. Lydia Seiders was determined to figure out why doctors conducting extensive blood panels and scans couldn’t find the cause of her child’s liver inflammation that was severe enough to be called borderline liver failure.
In spite of being told that Emma’s condition was stabilizing, Lydia didn’t believe that Emma was improving. She became sure of it when extensive bruising started appearing on her daughter’s leg. Lydia began methodically researching two of Emma’s symptoms and test results, which led her to consult with a pediatric oncologist. That doctor administered different tests and found that Emma’s platelets had dropped to a critically low level. The diagnosis was severe aplastic anemia.
Once she knew what they were dealing with, Lydia quickly discovered AAMDSIF and made rewarding contacts with its information specialists and peer-to-peer counseling program. She was advised to get in touch with NIH and, before long, Emma had been accepted into an aplastic anemia clinical trial. Her new and highly-skilled health care team confirmed that her failing liver function had caused the aplastic anemia, something they considered quite unusual. Then Emma developed another rare complication. Her optic nerve swelled, causing bleeding behind her eye and subsequent vision problems.
The Right Care at the Right Time
Emma proved to be uncommonly resilient as she battled a rare disease that had generated other serious health issues. But there were better days ahead. By her 10th birthday on June 2, Emma’s therapy at NIH was finally starting to work. The team reclassified her status to that of a partial responder to horse ATG treatment. That progress meant Emma could stop the regular blood transfusions on which she had been dependent for six long months. Being freed from the transfusion burden was a milestone, as well as a huge relief.
After that initial improvement, the NIH team adjusted Emma’s treatments, but two months later her levels began falling again. They decided that residual issues with her liver was making it more difficult to treat the aplastic anemia. A higher treatment dosage was reinstated, and her blood counts were restored to a safer level, although they remain below normal. She still experiences some treatment side effects, but Emma and Lydia – and most importantly, her doctors – believe that the worst is over.
Emma the Advocate
Lydia reports that, from the outset of her illness, Emma felt compelled to be public about her rare disease. “It was her idea to talk about aplastic anemia and have all kinds of fundraisers to help AAMDSIF,” she said. “She also wanted to inspire others to support the Foundation.”
Here’s one sweet example of how activism looks to Emma. On the eve of her big double-digit birthday when she was just starting to respond to treatment, she learned that she couldn’t have a regular birthday party because she was in a fragile condition with neutropenia. So she came up with a cool alternative. Emma and Lydia made 200 cupcakes and took them to NIH as a means of spreading awareness to nonmedical staff. She delivered her treats to receptionists, security guards, even the cleaning crew, all the while explaining bone marrow failure and the treatment she was getting at NIH.
When she got stronger, she began educating her teachers, friends and local schools about bone marrow failure disease, but Emma was looking for a broader audience. She turned to social media, where the ripple effect of her messages took off on Facebook. She peppered her page with creative videos and optimistic postings about her journey as a patient and her events as a patient advocate.
Currently Emma’s Facebook group has about 800 members. Lydia receives many requests from people who want to meet her daughter, particularly from families who plan to bring their child to NIH for treatment. It may sound like a tough job for a youngster still in recovery herself, but Emma is one tenacious young lady. Lydia expressed it this way: “Emma never wants any sick child to feel alone when we’re available to offer our support.”
Because they spend so much time at NIH and the Children’s Inn, its housing facility, they made a habit of reaching out to newly-arrived families. These selfless acts of generosity made an impression on the Institute, which decided to officially recognize them. First, the pair were appointed pediatric patient advocates for NIH newcomers, and then Emma was promoted to pediatric patient ambassador for aplastic anemia – remarkable achievements for a preteen who, over the course of two years, became critically ill, was successfully treated, and then turned her attention to the well-being of others.
You can learn more about Emma here.