Philippe and Joaquin, Father and son on a mission to cross Switzerland. This mission is a chance to live a lifetime of adventure before it's too late. To Cross Switzerland. Father, Philippe, running and Joaquin who suffers from Duchenne in an Electric Buggy.
Me and My Son: One chance, our chance our time, to live an adventure together.
"To dream anything you want to dream, that is the beauty of the human mind.
To do anything you want to do, that is the strength of the human will.
To trust yourself to test your limits, that is the courage to succeed".
The challenge: Crossing Switzerland
This project is much more than just a physical challenge. I want to make this adventure something special in the life of my son Joaquin. We will be crossing together the entire country of Switzerland traveling through one of the most beautiful trails in the country
A long Journey Together:
We decided to strive toward the goal of crossing Switzerland, him with the help of the Electric Quad and me running next to him, not because we want to be quick or efficient but what matters in this adventure is the journey and everything we will experience together. I wanted him to get away from his safe routine world, to experience the beauty of nature out there to be discovered and while we have to accepting that the wheelchair he uses in daily life sets the limits on his potential to explore the world we now have a fantastic chance to use a fantastic new invention. Due to Joaquin's muscular dystrophy he will be using an Electric buggy and I will be running the whole 455 km next to him. The Electric Buggy will allow him to ride up and down the trails. This new type of four wheel mountain bike makes the natural environment easily accessible to him and will enable him to break out and experience the world like never before.
The Panorama Trail:
The Panorama route between the Bodensee and Lac Léman leads through Switzerland's best-known Alpine foothill landscapes. It not only offers continual impressive Alpine panoramas but also countless spectacular views of many lakes. The trails offers a huge variety of landscapes and an impressive cross-section of Switzerland, from the Bodensee region over Appenzellerland, Central Switzerland, the Bernese Oberland and the Gruyère region to the Vaud Alps. An amazing Alpine panorama can be almost permanently admired between the Bodensee and Lac Léman, as well as countless superb views of many large and small Swiss lakes.
Length: 455 km
Height difference: 13700 m
Numbers of Stage: 10 days
An inventive mix between the traditional four wheeled go-kart and a downhill mountain bike, the Electric Buggy will allow Joaquin to ride up and down the trails. This new type of four wheel mountain bike makes the natural environment easily accessible to him.
About Joaquin (12 years old)
My son Joaquin was born with Becker Muscular Dystrophy (BMD). Becker is a milder version of Duchenne. As a parent, I didn't notice immediately that Joaquin was behind his peers in reaching developmental milestones such as walking, hopping and climbing stairs. I only noticed at this time that my son's calves appear to be enlarged giving the false impression that he was strong. At the age of 3 years old, Joaquin appeared to become more and more clumsy and often lost his balance causing him to fall down time and again. Climbing stairs, running and getting up from the floor became at this time more difficult and tiresome: and playing soccer turned to be an impossible dream. He was then diagnosed with Becker Muscular Dystrophy. Today Joaquin is 12 years old, and he needs a wheelchair part of the time because his weakened muscles cause him to tire easily.
We have been told that in most cases it is during the teen years when the most significant loss of muscle strength occurs. It is at this point that activities involving the arms, legs, or trunk of the body will require assistance. Most young men will retain the use of their fingers through this phase so they can generally still write, use a computer, and play video games. Heart complications will become the main threat to both health and life due to damage and loss of respiratory muscle. The muscle layer of the heart begins to deteriorate putting my young men at risk of a heart attack.
But we are not there yet :and I want Joaquin to enjoy his life the best he can So I want to live this dream with him while he still can and it's my mission to make it happen.
Some of my friends call me Forrest Gump; Honestly I don't know if I should take it as a compliment or not but running has become a way of life for me. I have had the privilege of running in some of the most incredible ultra-races in the world and love pushing my limits and I want my son to be able to experience something of the freedom I feel when I am free out in nature and pushing my limits. Forrest Gump might not have known really why he was running: but I definitely do. Coming from a background in martial arts during my youth and subsequently as a mountain climber I have discovered running as a way of keeping fit and staying healthy. I have raced thousands of kilometers across mountains, deserts, tropical forests, and volcanic islands. I'm have a strong need to be in constantly moving and I want to live life intensely and to the full.
While I have been a life-long sportsman, I never expected the sport to take on such a personal meaning as it does since my son Joaquin was diagnosed with Becker Muscular Dystrophy. Since then, watching a typical child ride a bike or run across a soccer field is something that I have learned not to take for granted. Since this day, every time I go out for my run I realize how lucky I am. just to be able to run.
ABOUT DUCHENNE MUSCULAR DYSTROPHY
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.Duchenne results in progressive loss of strength. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their mid to late twenties.
Becker muscular dystrophy, which is less severe than Duchenne, occurs when dystrophin is manufactured, but not in the normal form or amount. Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne. So When symptoms of DMD are managed conventionally, young men with the disorder usually die from respiratory failure before they turn 25. It has been estimated that anywhere from 9-50% of those with DMD die from cardiac failure.
- Eugénie Cazor-Spaargaren
- Marc E
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more