Amyotrophic Lateral Sclerosis, ALS, is a progressive disease causing all muscles in the body to disappear as nerve cells which are essential in the communication between brain and muscles, die. Anyone can get ALS. There is no cure and the cause is unknown. Patients will get paralyzed, loose the ability of speech, eating and breathing, resulting in death mostly between 3-5 years after the first symptoms and suffering through the process of getting paralyzed, without any hope to get cured.
If you want to support us in our fight against ALS, then please get in touch with us via e-mail.
Unfortunately my mother has been diagnosed with this horrid disease in 2011. Sadly, she has passed away in October 2016 after five years of fighting, hoping for a medicine, taking part in research, and raising funds and awareness. Saying goodbye to daily things which seem so obvious for a healthy person, she has learnt how to adapt and deal with all the limitations constantly and has always done this with a smile.
Fortunately my mum was is a fighter and she did not fight alone. Together with friends, my mum handcrafted thousands of napkin bowls, organised benefit dinners, and motivated many to participate in various fundraising activities: the Amsterdam City Swim, the Tour du ALS up the Mont Ventoux, France… Her persistency and ever lasting smile has resulted in hundreds of thousands of Euro’s raised for research. Unfortunately, it was too late for her as the monster ALS killed her merciless.
Best regards from far has lost its most grateful reader. Writing about fascinating places as we do, she will always be with us as she has supported our work so strongly. We will continue to take those who cannot travel around this precious globe.
We are open for volunteering projects: feel free to get in touch with us via e-mail.
South Africa, December 2004. I slowly slide the sticky rubber gloves around my hands. I am forced to follow this procedure before I am allowed to lift he crying hopeless one-year old baby from its bed that looks like a cage. I can’t see whether this child is a boy or a girl. This poor little creature stops crying as soon as I hold it in my arms to walk outside the room in this hospice as the stench of human feces is hard to bear. I look the kid in the eyes, and meet death. The child, too weak to make more noise rests its head on my shoulder, breathing fast. With my hand on its back I feel the lungs cracking, the kid breaths way too fast. My eyes fill with tears. Merely weighing two kilo’s, my index finger and thumb close easily around its thigh… Soon this kid will die, and I realise that we live in a world full of unfairness, where knowledge, food, and money should be shared more in order to put an end to this suffering. People close their eyes to this, but today my eyes meet the eyes of this baby and this hits me violently. The baby falls asleep on my shoulder, it leaks moist out of its blisters on its face which touch my skin. Death will follow soon but I am forced to leave the building without this orphan fighting against AIDS, born that way, mother ill herself.
I have seen death in the baby’s eyes, and made up my mind that I would save up money to return within 5 years. To do as much as possible which still seems nothing reflecting back, a drop of water in an ocean of orphans in South Africa who lost their parents due to HIV/AIDS.
South Africa, January 2009. I kept my word and I arrive at the Agape orphanage, close to Durban for a several-month volunteering project. Writing about this on this page is simply not possible as I could write a whole book about all the surprises and frustrations I came across. More will be published, reflecting back on what has been achieved, and what has been destroyed again.
Environment & economy:
No, we are not biking around the world, nor walking. Yes, we are flying, and it doesn’t mean we are not environment-minded!
As a side note, flying is often seen as the least green form of transportation… However, airlines fill up their planes as much as possible, engine manufacturers reduce fuel consumptions, and aircraft manufacturers optimize weight and drag leading to very decent fuel efficiencies on modern aircrafts. For instance, the average fuel consumption of an A380 is 3.27l/passenger/100km (with a 525-seat configuration), or 2.39 for an A350 with 315 passengers. They both take you from point A to point B about 6 to 7 times faster than a regular car on the highway (3.22l/100 km, assuming 2 passengers) or a “green” one (0.98/per passenger/100km for a 2014 Toyota Prius full with 5 passengers), in a rather straight line.
For both environmental and economic reasons, we pay a specific attention to favouring local companies and food wherever we are. Overall, we merely think to whom we give our money when we spend it so that it goes to the local economy as much as possible.