Matthews Journey

Matthews Journey In December 2021, my family was struck with the biggest tragedy anyone can begin to imagine. We will take you on his journey.

My 5 year old son would start a battle of his life time, against a life changing illness, known as muscular dystrophy.

These are the impacts of your body, when you are a victim of Duchenne muscular Dystrophy. It's a debilitating disease th...
01/29/2025

These are the impacts of your body, when you are a victim of Duchenne muscular Dystrophy. It's a debilitating disease that is relentless and does not stop until there is no muscles left to attack.

Being a rare disease, most of the treatment required is not covered by any of the services in Canada. So, if you're able, please drop some bottles off for Matthews account with our friends at Riverview Bottle Exchange

Thank you everyone for your ongoing support !

This morning, as Addison and Matthew walked into school, I watched as Addi waited for him to catch up to her at the stai...
01/28/2025

This morning, as Addison and Matthew walked into school, I watched as Addi waited for him to catch up to her at the stairs into the school, and she took him by the arm and guided him up the stairs to make sure he didn't fall. It took me back to this moment, and it reminded me his sister will always be there for him, and is one of his number one advocates, even at such a young age. As a parent, we're always wondering if we are making the right choices for our children. I may have made a lot of mistakes, but this definitely isn't one of them 💕 so proud of you my girl. You are always everyone's number one caretaker, you always make sure everyone has everything they need, and you're always one of the first ones to volunteer to help anyone in need. You may think you're a teenager at 9 years old, and we may bump heads a lot, but you are absolutely a rainbow on a cloudy day, a breath of sunshine after every storm. Don't ever change addi 💕.

Artwork provided by the lovely Sonia 💕
01/28/2025

Artwork provided by the lovely Sonia 💕

This year's Walk & Roll for Muscular Dystrophy Canada is scheduled for May 10th!Muscular Dystrophy Canada funds research...
01/27/2025

This year's Walk & Roll for Muscular Dystrophy Canada is scheduled for May 10th!

Muscular Dystrophy Canada funds research for neuromuscular diseases and aids families with equipment and other needs.

This will be the first year Matthew attends the event. Normally it's just the adult members of

With that being said, Team Matthew now only consists of me 😂 so if anyone is interested in helping fundraise and attend the walk, just let me know !

Matthew with his bubble gun, 3D printed at Stan Cassidy and customized with a button instead of a trigger.Just a reminde...
01/23/2025

Matthew with his bubble gun, 3D printed at Stan Cassidy and customized with a button instead of a trigger.

Just a reminder that you can donate recyclables to raise funds at Riverview Bottle Exchange under Matthews Journey.

Thank you for your support !

Matthews medication finally arrived, after being ordered from Germany on November 13th. Now we move back to the major is...
01/20/2025

Matthews medication finally arrived, after being ordered from Germany on November 13th.

Now we move back to the major issue at hand. Victims of rare disease in this country need more support.

$470 with absolutely no coverage from insurance or the province. In a civilized country like Canada, no one should have to choose between feeding their family or keeping their child's heart beating. Fortunately for us, our family and community would never let that happen, but not everyone is as fortunate as we are.

We are putting an end to the pop tab collection for Matthews medical devices, due to the metal prices it's unfortunately no longer a worthwhile method. If you're looking to help, we are switching our campaign to recyclables. There is an account at Riverview Bottle Exchange under Matthews Journey.

We want to thank Audrey and all the staff at Riverview Bottle Exchange for all of their support during an extremely debilitating time for our family.

09/26/2024

Imagine being born with a best friend, and watching them struggle, but at the same time being compassionate enough to help. You're a brave girl and we're proud of you for taking care of your brother.

09/25/2024

Hope is what they say you need in light of a vicious disease. Meanwhile, my son has a unique mutation of Duchenne that has never been reported before. (DMD c.4518 +5G>T) Yet, we have no interest from anyone in the medical community. My little boy is slowly heading towards his grave, and absolutely no one has an interest in finding a solution.

It's an assumption that if you have a Medical anomaly the medical field will be highly interested. That's simply not true.

Meanwhile I face the horrific experience of watching this all fold out with no hope in the world. Absolutely no one to take charge and figure out some moves to make.

In the interm, I have to figure out how to buy a $6000 manual wheelchair, knowing in a year we have to turn around and pay $20-30000 for a motorized wheelchair, a long with a hitch for my car and a trailer to transport it. They tell me my house is not accessible, so at the same time they want me to figure out somewhere else to live in this economy.

Life is not fair. Charity starts at home, meanwhile we can't support the families we already have on our soil. My little boy is going to lose his battle if something doesn't change... Please if anyone has any suggestions, let us know... Please... We're absolutely desperate... Follow for updates 💕

September is Muscular Dystrophy Awareness month, with World Duchenne awareness day on September 7th. My son Matthew has ...
09/09/2024

September is Muscular Dystrophy Awareness month, with World Duchenne awareness day on September 7th.

My son Matthew has Duchenne.

Duchenne muscular dystrophy is a severe type of muscular dystrophy predominantly affecting boys. The onset of muscle weakness typically begins around age four, with rapid progression. Initially, muscle loss occurs in the thighs and pelvis, extending to the arms, which can lead to difficulties in standing up. As the disease worsens, it begins to attack the lungs and heart.

Matthew has a unique mutation, that's never been reported in world history. Due to that, we do not know the course the disease will run on him. We have so many unanswered questions, that only the future holds.

Over the past 6 months, the disease has progressed rapidly, and it's been decided it's time for the aid of a wheelchair. This is not a decision that has been easily or hastily. Most boys with Duchenne do not need such aids until 11-13 years old. However, he is struggling and it is time.

We are working with Matthews medical team and MD Canada to try to find a trial he qualifies for, and hopefully we will find a different medication or a gene therapy that will slow the progression of the disease.

Let's never forget that a sick child like this, very much takes a village. Id like to thank my parents Cindy LeBlanc Lois Curtis Wightman-Budd and David Budd And my sister Eden LeBlanc for helping with countless appointments, tests, procedures and all the in betweens. My cousin Barb Budd McMahon for bringing extremely vital information and research to my attention, Matthews godmother Ashley Morton for helping with the day to day, and my friends Sonia, Denni & Bobby that I can always count on for moral support, research support and overall leg work of this nightmare, that we can't seem to wake up from. My inlaws Tricia Colgan Barrett and Keith R Barrett that are always sure to check in and make sure we always have everything we need. And special thanks to the Riverview beavers and scouts for all of their support, despite so many children learning that life may not always be fair, even from a young age. This is our family's village. We are forever thankful to all of you, and the members of our village that remain unmentioned.

06/05/2024

It's hard to believe the coldness of some people in the world.

Recently Matthews deflazacort program was transitioned to retail pharmacy from the hospital program. This is a medication that keeps boys walking for up to an extra 3 years compared to other steroid treatment.

The transition was set up in December, while st John still had supply for Matthew. The retail pharmacist made an error in the application process to health Canada and was denied supply by the manufacturer. What did the pharmacist do? Absolutely nothing. No notification. Nothing.

Flash forward to when I needed to fill his prescription, and I find out there is no supply. The pharmacist in question would not even come to the phone to speak to me. Our hospital pharmacist called and spoke to the retail pharmacist to make her reapply. This was Thursday. Yesterday I called the pharmacy because I was still without update. One of the other pharmacists went out of his way and verified the application was now approved, and we were waiting on the manufacturer.

I know we all make mistakes, but when we own them, they can often be solved. I reached out to muscular dystrophy of Canada, and they asked me for all details so they could speed up the process with health Canada and the manufacturer. It's often times as professionals we may not have access to the same resources as parents, especially those with a rare disease. This was a problem easily solved by myself and my contacts, but we live in a world where people don't want to take ownership and admit they made a mistake.

All this to say, sometimes it's better to admit you made a mistake, rather than risk someone's life.

This was my fear of leaving the pharmacy at st John Regional, because the pharmacist there, is fully invested in the boys in the program. Their gains are her gains, their losses are her losses. We had a few bumps in the road during this journey, but they were always addressed by her, and even after our transition to the retail program, she could have passed me off, but she didn't. All of this to say, more people in this world need to be like Hope at St John Regional. She says she is all about the children, and I fully believe her when she says it. More professionals in the medical field could really take a page out of her book, and truly understand that caring and compassion is easier than being transactional. With her and many other members of Matthews team, we have never felt alone. At the end of the day, that's what's most important. Not feeling alone.

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28 Rosemount Avenue Unit 12
Sussex, NB
E4E2R6

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