Our son Nic is a beaming and lovely 9-year-old boy from Zurich. He loves nature, so it's not surprising that his favorite color is green. He pays attention to the smallest details; on the way to school, for example, he collects stones in which he discovers something special. He likes to go to school, and mathematics is his favourite subject. His biggest hobby is running - and he runs very fast. He enjoys feeling the wind and the freedom. At home he is buzzing around and everyone appreciates his sunny nature. His large family gives him a warm feeling of security. Especially his three brothers and sisters are the most important thing for him. He is satisfied with himself and the world.
But suddenly we noticed something strange with Nic. He began to articulate more and more slowly and unclearly. At first we thought of a lack of attention because his little sister had been born shortly before, and we assured him of our fullest love. But one evening in March 2018 during a dinner Nic couldn't close his jaw anymore and could hardly eat without supporting his lower jaw with his hands.
When we noticed that this was not a one-off incident, but became worse, my husband and I went to the paediatrician and later to the doctors in the paediatric hospital. That's where they finally took an MRI image of Nick's brain.
The meeting took place on 1 June 2018. We sat there, holding each other's cold hands tight. The diagnosis came: NBIA. A very rare genetic neurodegenerative disease that affects one person in a million. We'd never heard anything like it before. The cruel and deadly course was described to us without digression, among other things that the life expectancy lies with approx. 10 years. Just terrible. We were in shock. My husband and I looked at each other in bewilderment and had to stare at the MRI pictures again and again in order to check again whether our son's name and date of birth were really on them. We asked the doctors what we could do now. The answer: "There's nothing you can do for your son. There's no cure for it. Enjoy your son. We recommend that you visit a support group."
We were petrified...
When we were also told that due to the genetic origin there was a probability that our other three children could also be affected by this degenerative disease, a feeling of powerlessness and loneliness struck us.
It took us over 10 minutes to find the exit again. We stood outside, looked at each other speechlessly, embraced each other firmly and began to cry, as we had never cried before. It concerned the most important thing: our Nic, our children. It was all boundless pain and absolute despair.
In that sad moment, my husband grabbed me by the shoulders, looked at me and said, "The fight stops when we stop fighting."
We told Nic that he had a very rare disease and that there was no medicine for him yet. He knocked his fist on his knee and started crying. But shortly thereafter he pulled himself together and said: "Mom, Dad, I trust you and you will do it!" At that moment our breath stood still.
During the first weeks we felt as if we were in a surreal world, where we were physically functioning but mentally wandering around somewhere. One of us was worried about the family, the other one never stopped researching to look for any possible solutions.
We were aware that "family normality" had to slowly return. Our children should be able to continue their daily lives as unencumbered as possible. My husband and I decided: no constant bringing up the subject, no crying in front of the children and treating Nic like before.
My husband finally discovered Prof. Dr. Susan Hayflick in Oregon and her Spoonbill Foundation, which was a first ray of hope for us. She and her team are researching a coenzyme called CoA-Z. This means a chance and gives us hope.
After we contacted her, we were able to administer Nic a vitamin (pantethine) with her help, which at least alleviated the symptoms of the disease, but did not cure it. Nic is stable at the moment, but the uncertainty is constantly accompanying us as to when the next deterioration will occur.
Nic has never complained that we have not yet found a solution. In between he wants a little massage to relieve the cramps or finds it stupid that he can no longer read as fluently and loudly as before. Otherwise he is our sunny Nic, whom we have described at the beginning, despite his limitation in speaking and eating.
Nic is suffering in silence and is fighting like a lion.
The Green Sneaker Campaign
Nic sees his parents and his whole family taking care of the Green Sneaker Campaign, which calms him down and gives him strength.
We thank you for your active support in the race against time, which we absolutely must win for our Nic and all other children.