A Grandma's Heart
January 06, 2017
BENEFITING: Cure JM Foundation
EVENT DATE: Feb 19, 2017
Lisa Holland wrote -
Family and Friends, In May 2016 our daughter, Ava, was diagnosed with a rare and serious auto immune disease called Juvenile Dermatomyositis (JDM or JM).
JM is an autoimmune disease in which the body’s immune system attacks its own cells and tissues. Weak muscles and skin rash are the primary symptoms. There is no cure for JM. Some children experience a mild form of the disease and may go into remission. Others follow a more severe and potentially debilitating course that can be life-long. Some JM patients will lose range of motion. Some will battle an array of serious complications, resulting in the inability to walk, ongoing pain, disfigurement and even death. Whether the course of the disease is mild or severe, JM is life changing for all of these children and their families.
JM is hard to diagnose because it is so rare. In our hearts we knew something was wrong with Ava for about a year prior to diagnosis and beginning treatment. Ava presented with a painless, moderate to severe rash all over her body. She also experienced daily fatigue and exhaustion. It was hard for her to do anything beyond a normal schedule of activities. In the short time since her diagnosis she has been treated with a chemotherapy drug, an antimalarial med, steroid and IVIg (monthly 5 hour infusions of intravenous immunoglobulin). We are grateful to our Lord to share that at this time Ava is responding really well to treatments. Her energy is up and her rash is almost gone. We are following her labs monthly and hope to share one day that she is in remission.
Over the weekend of February 17-19, 2017, approximately 125 JM families from around the world will be attending the 2017 Cure JM National Educational Conference in Austin, Texas. The conference is designed to bring together JM families and physicians to connect and share the latest in JM research and treatments.
Additionally, Cure JM families will participate in either the Austin Marathon or the Walk STRONG to CURE JM family fun walk to raise awareness of JM and raise funds for JM research. Our family will be walking on Ava’s behalf. Would you consider running/walking with us or making a gift to our “Team Ava-Walk Strong to Cure JM” team? Your gift will fund research and educational programs bringing us closer to a cure for these kids. Any amount can make a difference. Please feel free to forward this to anyone you think may be interested in hearing our story and supporting the cause.
We thank you for your love and support and your prayers for Ava. We are so grateful for you.
Sabin, Lisa, Kendall and Ava Holland
Walk Information: Sunday, February 19, 2017
Just outside Austin at the Lakeway City Park, 502 Hurst Creek Road, Lakeway, Texas, 78734
9AM: Registration opens
10AM: Walk Kicks Off!
11AM: Post-walk food, games, prizes, bounce houses, and family fun
To learn more about the Walk, contact Walk Chair April Duley at email@example.com. To learn more about the Cure JM Conference, contact Conference Chair Kristine Alderfer at firstname.lastname@example.org.