In 2015, the Hope for Gus Foundation traveled to Nepal for the first Everest to End Duchenne trek.
We had a team of 7 people, plus a filmmaker, and raised over $100,000 for research for DMD.
Prior to the trek, Tonya had begun to communicate online with a Nepali gentleman who had opened up his home outside of Kathmandu for boys with Duchenne. In Nepal, a very poor and developing country, there are no federal or state funds to help those with disabilities and life-threatening illnesses. There is also no universal or government-funded healthcare. These boys couldn’t even go to school, because there was no way to transport them. Villages have mostly rocky paths for roads and wheelchairs are expensive.
But the group of boys was able to move from their villages to Nirmal’s home and live together, having companionship and social interaction. Nirmal’s family cared for them and organized art lessons, internet access, and even had a physical therapist visit from time to time. But the house was old and not conducive to those living with a mobility disability. The family had to carry each boy up a flight of stairs just to use the bathroom and they all slept together on one bed.
The 2015 ETED team was able to visit the home, called the Muscular Dystrophy Organization of Nepal, and were welcomed by the family and boys with a lovely ceremony and tea. We were able to ask many questions about life in Nepal for someone with muscular dystrophy and saw firsthand how they lived day-to-day.
Before we even began the trek to Everest Base Camp, the team decided to donate a portion of the funds raised to help improve the quality of life for these young men. Since then we have supported them through each of our 4 Everest treks and also provided Covid relief.
We are currently working with other foundations to help finish the new home so the boys can come back and live together at the center.