Thanks to Feel the Love, this mom and son with muscular dystrophy do not have to worry about heat or hot water.
Photo: Dareck Makowski/Global News
Winters in Edmonton, Alberta Canada are known for being long, harsh and cold. For a family living with an old rickety furnace, it can sometimes feel like a big game of chicken. Will the furnace decide to call it quits before the cold does? Recently, a family who was in that exact situation was gifted a new furnace and can now be rest assured that they will be toasty warm during the long Canadian winter.
What makes this story more special is the fact that this was for a mother and son who both have muscular dystrophy. While Maria (the Mom) knew that her furnace needed to be upgraded, she was in a tight spot. After recent renovations to make their place more accessible to her 25 year old son, who has a more severe form of MD than his mother, there just wasn’t enough cash available to replace the furnace.
Muscular dystrophy affects hundreds of thousands of people worldwide. Many people don’t realize that MD is more than just one disease, but rather it’s a group of diseases that cause progressive weakness and loss of muscle mass. There are many different kinds of MD with varying levels of severity. This means that the symptoms and effects of the disease vary significantly from patient to patient.
The most common form of MD is called Duchenne muscular dystrophy and typically targets males during their childhood years. Other forms of MD strike during the adult years and cause a wide range of symptoms from muscle weakness to joint pain to poor eyesight and even chronic headaches. MD has a very strong genetic component and while carriers don’t always end up developing the disease itself ,they sometimes have to deal with a few other medical problems that have ties to MD. Other carriers will eventually develop a very mild form of the disorder.
There is currently no cure for MD. Researchers are working hard to figure out what causes the disease, how to treat it and more importantly, how to cure it. There are a number of treatment options available to patients depending on the type of DM and it’s severity. Treatments range from medication, to physio and occupational therapies, as well as a number of clinical trial treatments.
Keeping warm during the winter months
Maria and her son were beneficiaries of the generous donation, thanks to the national Feel the Love program. Through corporate sponsorship and volunteers, this program provides those in need with new upgraded heating equipment. When she applied, Maria had hoped that her furnace would be replaced. Regardless of the fact that her and her son are battling different forms of MD, or that her son was also dealing with heart problems, or the fact that her furnace was 44 years old, hearing that she won still came as a shock.
Making sure that she could provide a safe and warm home for her son is especially important. Like many people who suffer from MD, Maria’s son has also been dealt the hand of slow cardiac failure. At the moment, he lives with only 23% heart function.
Heart Failure and Muscular Dystrophy
There has been an alarming increase of end-stage heart failure causing death in patients who are battling Duchenne muscular dystrophy (DMD), which is the form of MD that Maria’s son has. There are currently a number of studies being done to figure out how to better detect heart failure and how to effectively treat it. To figure all that out, they need to make sure that they understand why patients with DMD, the most common form of muscular dystrophy, are also dealing with the added challenge of cardiomyopathy.
What is known:
- A genetic mutation that causes a protein called dystrophin results in DMD
- DMD attacks the muscles and affects a person’s ability to walk, use muscles in other parts of their body and can even make it difficult to breath.
- The heart is a muscle and, just like the other muscles in the body, can be affected by DMD leading to heart failure
- There are a number of ways that the heart is affected by DMD. Those include progressive changes to heart function, arrhythmias, congestive heart failure and disease of the heart muscle itself.
- Unlike the typical symptoms that appear for someone who is suffering from heart failure, those with DMD present very differently and slowly and that’s what makes diagnosis difficult.
- DMD patients typically begin to show symptoms around the age of 10
Early treatment is critical and difficult to get when the condition itself is difficult to diagnose. Along with early treatment and diagnosis, prevention is also very important. More research is needed to figure out how best to prevent the development of heart disease in DMD patients. Currently, the use of beta blockers, anti-inflammatory drugs as well as steroids, are the go-to for those with DMD. As more studies are conducted, the hope is to find more effective ways to prevent heart failure.
For Maria and her son, the knowledge that they can expect to be warm and comfortable this coming winter is a relief. Aside from her son’s heart problems, Maria also is dealing with plenty of medical issues, including a milder form of MD and spinal damage, making it more difficult to walk.
That’s what makes program like Feel the Love so important for families like Maria. Not everyone is in the position to be able to upgrade their heating or to repair ancient appliances. When thinking of how to support someone who is battling diseases like muscular dystrophy, heating certainly isn’t the first thing that comes to mind, but it really does have an impact.
Imagine living with a disorder that slowly strips away muscle control. Now, imagine having that kind of disease and worrying about the possibility of having to live in a frigid house during a harsh winter. It’s not a comforting thought. That’s why making sure that someone has a safe and warm place to live actually goes a long way in helping them battle their disease.
Feel the Love Campaign is a program that selects nominated homeowners to receive a new, highly efficient furnace. The equipment is donated and the work is done by employees who volunteer their time. In this case, the workers were so happy to be able to help Maria and her son, especially when they were greeted with welcome and thank you signs handcrafted by the both of them. So, it was a given that when the workers saw the state of her furnace and her hot water tank, they went above and beyond and replaced both.
Both the furnace and the tank were ancient and urgently needed to be replaced. Programs like this one are about more than just helping someone keep warm. They are also about helping someone live with their disease in the comfort of their own home.
Families like Maria who face a double blow of medical challenges need all the support and help they can get. Thanks to Feel the Love, Maria can now concentrate on taking care of herself and her son without having to worry about having heat and hot water this winter. A win-win for all involved.