A loud roar caused us to look up. There were almost 20 motorcycles driving down our street. We wondered if they were headed to a party at a neighbor's house. We were shocked when they parked in front of our house and announced they were there to support Sky's Stand Against MG. She excitedly served each one a glass of lemonade. One of the group members also had myasthenia gravis and had read about Sky’s lemonade stand. They decided to dedicate that weekend’s ride to a 45 minute Sky Ride.
My husband and I had researched a few charities before deciding that by working with MGFA, we could make the biggest impact for people living with myasthenia gravis.
MG is an autoimmune neuromuscular disease in which antibodies attack and destroy neuromuscular connections. This can cause weakness or inability to use the muscles that control basic movements such as lifting, walking, swallowing and breathing.
Sky was just ten years old when she was first diagnosed with myasthenia gravis. It has been a crazy, winding path these last 5 years. Sky’s MG started out with the typical eye twitching and we hoped that it would stay as Ocular MG. But it became generalized before the next year started. It began to affect the rest of her face. Then her arms and legs. Finally, her breathing. She has had some issues with her MG, including a nearly 3 week stay in the PICU, surgeries and being home bound for a month.
Our family has had to adapt to a “new normal”. Like many people with MG, Sky has good days and not so good days. MG can change hourly. She may appear to be a typical 15 year old child then an hour later she may have a difficult time talking or walking. Currently there are limited options for medication in the treatment of MG. Even on a good day, Sky takes 24 pills.
Sky is as active as her MG allows her to be. She isn't able to do all the sports she wants because of her medications her bones are brittle and her muscles are spongy. However, she dances 3-4 times a week and throws shot put and discus.
Just as we have been fortunate to have wonderful support from our family, friends and new biker friends, we are asking that you take a moment to make a contribution for research, raising awareness and supporting those with MG. There are so many challenges that remain. About 70,000 people in the U.S. have MG. Some do not respond to any of the current medications. Others may do well but may still have a recurrence when stressed. Even when medications help, they still have a downside, such as bone loss. We need better treatments---and eventually a cure!! While our choices and care are better today than they were 30 years ago, so much remains to be done!
Please register to walk with us OR make a pledge to help us reach our goal!
Together We Can Make A Difference!
Steve and Stormee