Having a rare disease is not an easy life. I have limb-girdle muscular dystrophy, so in addition to the physical decline of my body, I also need to be hyperaware of my mental health. I don’t think humans were hardwired to adjust to life on their own with a…
Columns
This week, I found myself reflecting on how much my life has changed since I joined Shalom Medcare, a care transport and medical escort provider in Singapore that was founded in 2021. Working there has become a part of how I advocate for healthcare equality for those who live…
They say the third time is the charm. However, as a mom to three sons with Duchenne muscular dystrophy (DMD), I don’t find that to be the case. I share seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and…
On May 1, my daughter Jill graduated from the University of Pittsburgh with a master’s degree in public policy and management. She also received the department’s student achievement award and was the student commencement speaker. Earning this degree took quite an effort, as she simultaneously worked full time as director…
It started long before I had the words to explain it. At 9 years old, I noticed small things: I struggled to lift my arms the same way as my friends, I grew tired more quickly, and others were much faster than me. But at that age, it was easy…
My dear friend Colin Rensch had a saying: “If you think you can, then of course you can.” I met Colin because I live with limb-girdle muscular dystrophy, and he lived with Duchenne muscular dystrophy. Colin, who defined passion, purpose, and positivity, passed away last month at the…
I have been writing here about my family since August 2021. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD). In my first column,…
The death of my dear friend Timothy Chan last month still affects me deeply. A couple weeks ago, I stood at his memorial, speaking about a friend who had lived fully despite the barriers associated with a lack of awareness about Duchenne muscular dystrophy (DMD) here in Singapore.
My son Charlie has recently been unable to get into his power wheelchair on his own, and I know I am watching him lose the ability to ambulate, as I did with two of my other sons. Charlie, 15, like his brothers Max, 20, and Rowen, 17, lives with…
One problem dealing with a progressive disease like facioscapulohumeral muscular dystrophy (FSHD) is that there’s no way to predict the pace of disease progression. I think this is true for the aging process as well. In my case, it may also apply to the joint deterioration I’ve experienced following…
Recent Posts
- A virtual FDA meeting gave me the opportunity to advocate for my sons
- Discover new science in muscular dystrophy at the 2027 MDA Conference
- How respite care gives my family caregivers much-needed travel breaks
- Continued steroid use tied to slower lung decline in adults with DMD
- In our new home, we will have more space for our sons with DMD