Written by Lacey Woods
From a young age, I knew I wanted to be a mother, to have biological children and also to adopt. This desire stayed with me throughout my childhood, including when I was diagnosed with muscular dystrophy at age 16. Leading up to the diagnosis, I carried a quiet realization that something about me was different than my peers. I fell frequently, couldn’t keep up when it came to running, and experienced painful contractures in my legs.
It was a late afternoon when I answered the phone to a doctor telling me I had muscular dystrophy, most likely limb girdle; I had no idea a call like this was coming. I didn’t understand the words he was saying, but I do remember asking was if I would still be able to have children, and his response: no. My identity of who I thought I was started to crumble. I developed a coping mechanism called denial. I convinced myself that as long as I kept the disease locked away in the recesses of my mind, I could pretend it didn’t exist.
In the midst of my denial is when I met my husband, I was 20 years old, and we were both working in the same real estate office. I knew he was the one right away and within four months we were married. Stewart had a daughter from a previous marriage, and I became an instant mom to Domonique. When I became pregnant, I could no longer ignore the symptoms of the disease because they started to accelerate. My legs became weaker, walking became labored, and getting out of a chair took effort. But
none of this mattered the minute I laid eyes on our daughter, Savanna.
I loved being a mom and even though my disease had progressed during my first pregnancy I was
steadfast in my desire to have another child. During my second pregnancy my hips became unstable, I could no longer rise up from a toilet, and stairs were no longer viable. My weakening muscles felt irrelevant when I met our daughter, Ireland. Two years later Stewart and I adopted our 7-year-old niece, Paige. We now had four amazing daughters and I couldn’t imagine my life without them. At times when I felt trapped inside my weakening body, I would look at my children, see my heart and soul surrounding them, and I would feel free.
Upon seeing a doctor in 2007, I was officially diagnosed with limb girdle muscular dystrophy type 2i (LGMD2i). I received that diagnosis over the phone as well – but this time felt different, this time it was my decision to be tested and I knew the call would be coming. The call went well until I was informed that with LGMD2i, the heart and diaphragm were most likely involved. I was told how important it was to get an appointment with a cardiologist and a pulmonologist. To be honest, I didn’t know what a
pulmonologist did let alone what my diaphragm did in my body.
I went to the cardiologist and had an echocardiogram. My heart felt fine, and I didn’t feel any symptoms, so it was shocking that by the end of the visit I learned I needed to start 3 different heart medications. I became very familiar with my diaphragm and its function when I developed a respiratory infection. I could not stop coughing and breathing was quite difficult. I lost a lot of weight as I didn’t have the energy to eat. When I finally saw my respiratory therapist he told me in no uncertain terms, that if I did not start using a BiPAP at night and when I lied down for naps, and a cough assist during the day, the
respiratory infection could end up killing me.
This was the first time I acknowledged that this disease could shorten my lifespan. I could not leave my girls without a mother. It was time to fully acknowledge that I had a progressive muscle disease and to learn everything I could about LGMD2i. While the kids were in school, I would spend my days researching. I signed up for different trials that were happening throughout the country, gave skin and muscle biopsies, created a LGMD2i website, a LGMD2i Facebook group, and became the Global Patient Representative for the FKRP Registry.
To say I became obsessed with 2i is an understatement. I wanted to share everything I had learned and to create a community so that no one else would have to go through the journey alone. Fast forward a few more years and all of our girls had graduated high school and had left the nest so to speak. I felt I had faced my disease head-on and was doing all that I could for my body, my family, and for the 2i community.
Stewart and I saw a need in our community for foster parents and I realized my yearning to be a mother wasn’t done. I remember attending our first foster care class and feeling nervous that somebody was
going to tell me that I didn’t qualify to be a foster parent because of my disability and all the challenges that accompanied it. My determination did not allow that to happen and I’m proud to say that Stewart and I have fostered over 20 children and our family grew again when we adopted two of our foster children. We now have five girls, one boy, and three grandchildren— and my heart is full.
Lacey Woods inherited the rare genetic condition, Limb Girdle Muscular Dystrophy type 2i (R9). Unbeknownst to her parents they each carried the exact same genetic mutation giving their unborn children a 1 in 4 chance of having the disease. Lacey is the only one in her lineage that is affected with this condition. Lacey is a wife, mother, adoptive parent, foster parent, grandmother, and advocate for Limb Girdle Muscular Dystrophy type 2i (R9). She created the LGMD2i Facebook group, is the Global Patient Representative for the FKRP Steering Commitee, a published author for an article in the Annals of Clinical and Transitional Neurology and is the proud recipient of the first “Pioneer for LGMD2i” award from the Cure LGMD2i committee. Lacey resides in the Pacific Northwest where she surrounds herself with nature in a home filled with love, laughter, and numerous animals. She works as a certified trauma informed coach and specializes in helping those who are dealing with the trauma of receiving any type of diagnosis. (www.laceywoods.com)
