I was going about my life as usual when in walked a lady named Maggie. We instantly became friends. One evening I went to Maggie’s house as we were going to have a ladies night out. While I waited for Maggie to finish getting ready, I sat on the couch next to her daughter Madasyn. She was watching television and I just started chatting with her and asking her questions, knowing that she would not be able to answer me in the typical way. After a few minutes, I told her I was going to check on her mom. She moved closer to me and put her hand on my leg. I was surprised and amazed! This little girl was letting me know that she wanted me to stay with her longer, so I did. Madasyn stole my heart that very moment!
Madasyn’s has blonde hair and her smile lights up the room. She is full of spunk, and she is living with a disorder called Rett Syndrome. She was born a typical little girl and then without warning Rett quietly started taking skills away from her at age 4 ½. This typical girl slowly started to change with no onset warnings. Rett is a neurological disorder that affects the entire body. This devastating disorder took many of her functional skills that she had full independence with. Rett Syndrome set in and she lost her speech, started to have seizures, feeding issues, her motor skills were affected, and apraxia set in. Often, Rett is seen exclusively in girls. Every 90 minutes, a girl is born with Rett Syndrome. However, there are boys that have this disorder and their medical needs are significantly more challenging. You will see Madasyn wring her hands as this is a common trait in those children affected by Rett Syndrome.
I have never met anyone quite like Madasyn. She is a special young lady. She is trapped in her own body that doesn’t work often when she wants it to. Over the years she has had to have intensive therapy to keep the skills she has and has had to learn new ones, like communicating with her eyes on a device. She is very brave and has a beautiful soul.
Through the years, I have gotten to the know the whole family. Maggie and her husband Brian are two of the most amazing people I know. Taking care of Madasyn requires more patience than most people have or could imagine. She needs constant care and attention. I know how hard it is to take care of her because I stepped in once, so Brian and Maggie could get away. Until I was completely responsible for her care, I had no idea what they went through day in and day out. As hard as it is, they manage to get through it. They are stronger than they know. You can see the unconditional love given to Madasyn by her brother and parents. I believe she has thrived due to having such a supportive and loving family. Not allowing her disability to take over, she is just like any typical girl and it’s wonderful to see her for who she is.
I feel fortunate that both my children are typical. I don’t know if I would have been strong enough to take on such a task as to raise someone who needs so much. That’s why this family is my inspiration. They are always there for her, with lots of love and respect. They do not take life for granted the way most of us do.
I am running the Boston Marathon in 2020 to help raise money for Rett Syndrome because I would like to see life become easier for these girls and boys. While there is no known cure right now, raising money can help find treatments that will help these children live a life without such pain and improve their quality of life, a life with less barriers. Raising money can give these families much needed opportunities to be supported by one another and allow them to feel less isolated.
I feel incredibly lucky to be a part of Madasyn and her family’s life. I had no idea that over ten years ago, an eight year old girl would inspire me to want to do better for myself and others. I am truly honored to run in her name.