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After receiving news that Ella has not qualified for the clinical trial we simply move forward.
Each year, Families of Spinal Muscular Atrophy (FSMA) holds a conference that invites families with children suffering from SMA, the doctors who treat them, and the researchers who work tirelessly to find viable treatments and a cure for SMA. It's an incredible experience to say the least. We've attended one conference since Ella was diagnosed.
During the short time we were there we found it to be one of the most special and enlightening experiences. We found ourselves surrounded by families that are going through exactly the same things we are going through. They understand, on a level that is elusive to most, the feelings and challenges we face as we journey through life with SMA. The common ground that we share draws us closer to one another, nurtures friendships, and offers us unparalleled support.
The kids, too, walked (or rolled) away from the conference with a new found respect for one another. They began to understand, on the simplest level, the realities of SMA; how best to navigate through their daily lives; how best to practice empathy for one another; how best to be a part of a family that has the specific challenges SMA presents.
There's a reason, however, why the conference is an annual event.
Through diligent research the scientists are always moving forward. The conference offers them a chance to connect with families and doctors to explain their advances in research as well as listen attentively to both parties.
Doctors have different approaches in the ways in which they view best practices for their patients. The families can get a better idea of differing medical opinions and even find a "good-fit" doctor for themselves (we found Ella's orthopedic surgeon at the 2013 conference).
Families find new ways to care for their kids and themselves. The siblings are reminded of what they learned about before and are given a chance to renew their knowledge while simultaneously learning new skills and strategies. As they grow older, their responsibility within the family grows...the conference provides an outlet as well as an inlet for them...a way to express themselves safely and empathetically while also helping others with their feelings and struggles. It's a process that grows with them as time passes. The conference is such a wonderful way to empower them.
And Ella. The conference is probably most important for her. It provides an atmosphere where she can identify with other children and adults who have SMA. She is afforded the opportunity to see, talk with, and connect on multiple levels with the struggles she faces alongside her peers with SMA. A disease that is uncontrollable must be hard for a kid to handle...knowing that other kids have and do experience the same lifestyle is paramount to her positive outlook on life.
We'd love to attend the conference this year in Kansas City, MO. It runs from June 18-21 and is a 5-7 hour drive. Of course, we would need some help in terms of financing such a trip.
If you feel that you might be able to help us finance this year's trip to the 2015 FSMA Conference we have a fundraising page set up specifically for that purpose.
From conference registration, hotel, meals, and driving expenses our goal of $2,000 has been set.
To donate to our trip please follow this link:
Thank you so much for taking the time to read our blog and for supporting us in the many ways that you all do each and every day.
Michael, Lindsay, Ava, Henry, & Ella
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