Hi there, my name is Lynette, and I am mom to Emery, Lanna, and Liam and wife to Charlie Beard.

In October 2021, we received life-changing news that my husband, Charlie, has Myotonic Dystrophy Type 1 or DM1, as I'll refer to it. DM1 is a type of Muscular Dystrophy. With this diagnosis, so many strange symptoms we noticed throughout the past ten years started to make sense.

Because DM1 is a genetic disease and the likelihood of it being passed down to our children was 50%, I pushed for genetic testing for our kids. In March 2022, we received news that our two older children, Emery and Lanna, have DM1. Again I felt a sense of relief knowing that their DM1 could explain many of the "strange" things I experienced with my children.

Here's a little information about Myotonic Dystrophy:

Myotonic dystrophy is a rare, multi-systemic, inherited disease affecting an estimated 1 in 2,100 people, or over 3.6 million individuals worldwide. DM1 is the most common form of adult muscular dystrophy and is considered the most variable of all known conditions. Symptoms usually become more severe with each generation, yet there is currently no cure and no approved treatments. Mutations prevent genes from functioning correctly, which can impact multiple body systems. People living with DM1 experience varied and complex symptoms, from skeletal muscle problems, to heart, breathing, digestive, hormonal, speech and swallowing, diabetes, immune, excessive daytime sleepiness, early cataracts and vision challenges, and cognitive difficulties. DM1 doesn't always look the same. The different body systems affected, the severity of symptoms, and the age of onset of those symptoms vary significantly between individuals, even in the same family. In our family, DM1 looks different for each person.

As you can imagine, because DM1 affects so many systems of the body, Charlie, Emery, and Lanna have many specialists to see and undergo many tests. Early on in our journey, Charlie and I decided that I (Lynette) needed to be at every appointment. Because of the sheer number of meetings, I have had to restructure my business to ensure I have someone to consult me, and I took a lower EFT with Red River College. Doing this has allowed me the flexibility to attend appointments but has significantly reduced our income.

Medical trips include hidden costs that most people don't think about - parking, food, gas, and time. In addition, the different therapies such as PT, OT, family, and personal therapy (and the list goes on) can only partially be covered by insurance. You can imagine that basic insurance doesn't even come close to covering our costs. The financial burden this disease has begun to take on our family has been a surprise.

The funds raised will go towards medical expenses and therapies. It will allow us the freedom to put Charlie and the kids into treatments we otherwise cannot do. Also, we would be able to go for private testing that we cannot receive through the public system. Your donation will help support us so that we can continue to provide the therapies/appointments our children and Charlie need while still providing the necessities for our family. Thank you so much for taking the time to read this and for your donation. We genuinely appreciate it.