As Patient Advocate, Emma Makes New Friends | Aplastic Anemia and MDS International Foundation

As Patient Advocate, Emma Makes New Friends

When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.

Within a few weeks there was a new patient and we were asked to visit with the family on site at NIH. The little boy, Isaiah, was struggling with the breathing treatments he needed and Emma was asked to encourage him. We visited with the family for hours. Emma and her younger sister played Legos with Isaiah and Emma provided tips for enduring the taste of the breathing treatments. This family began closely following Emma's story and we've kept in close contact ever since. The mom, Amanda, is now my right hand for the EmmaStrong Foundation and Isaiah serves as an honorary president with Emma! 

Personal support is vital and is the main focus of our small nonprofit. The personal connection between families who have been touched by bone marrow failure does not carry a dollar value. I continue to research and stay up to date through AAMDSIF so when it’s needed, I can do more than just listen.

At Emma’s next NIH visit, her physician’s assistant was thrilled with Emma’s advocacy work while visiting with Isaiah –and their ongoing relationship.  So Emma was “promoted” to pediatric patient ambassador for aplastic anemia. At this point, we gave the NIH staff our permission to discuss our basic info with any future patients and families so we could offer them support as well. The next patient we met with actually knew #EmmaStrong via Facebook and was following her story well before we set foot into their room.

We provide families with the AAMDSIF awareness bracelets and explain why we wear them - I rarely take mine off.  We also encourage them to go to www.aamds.org to get more information. The bracelets are a constant reminder of the support we have. This helps me keep going and serves as a great conversation starter.

Because our #EmmaStrong videos have been seen internationally, I receive requests from other patients to meet her. Her one-minute videos have touched the hearts of other pediatric patients as well as adults, and even those not affected directly by aplastic anemia. Requests to meet #EmmaStrong typically come through Facebook. Some take weeks to months of planning and coordinating because patients come in from other states. We normally hold meetings at NIH. But we have recently received a request from Johns Hopkins and have started international contacts through video chats.  

Our meetings with other families happen different ways -- sometimes we overhear that a new aplastic anemia family is coming to NIH, and we introduce ourselves to them as soon as we can. We encourage them to reach out for support when they need it. Some already know who we are because of Emma's social media presence. We just want to make sure no one remains alone when they could reach out to us. It's encouraging to help – and that also helps me to keep going.