“Tobias was smart and kind. He was a warm and funny person. The kind of person we need in our world. He did the right things and had incredible courage. I wonder who he would have been today? Would he have children? Children who would have been my girls’ cousins. When I was 14 years old in 1987, he was diagnosed with Severe Aplastic Anemia.
Four years later, he lost his battle with the disease and passed away on 30 December 1991. Since then, nothing has been the same and although life goes on and we can laugh, someone is always missing. He was only a year younger than I and we did most things together. We shared friends, school, and activities. We shared life. In many ways, I still feel half and alone.
In grief, it feels as if nothing means anything. But life wants it differently and goes on. We are learning to live a new kind of life. A life that, despite the loss, is good. I now have two amazing girls, Hannah and Dinah. They are the meaning of life for me. I trained as a nurse and then as a midwife.
I work with life.
I so wish I had been a match and could have given my little brother bone marrow. We were not a match. Every day someone in Sweden falls ill who would need bone marrow/stem cells to have a chance of recovery. The Tobias Registry has enabled many people to receive a transplant and a second chance at life.
In my grief, it feels good that we have been able to help through the Tobias Registry. This makes Tobias’ death a little less meaningless. I hope that people will continue to sign up with the Tobias Registry so that together we can save lives and keep families together.”
Text by: Elisabeth Storch, Tobias’ older sister. Image: private
The Tobias Registry is the Swedish registry for blood stem cell donors. The registry was launched in 1992 by the parents of Tobias Storch, who died at the age of 17 while waiting for stem cells. The Tobias Registry matches patients with suitable donors in Sweden or abroad. The Tobias Registry has over 230,000 registered potential donors. The vision is to double that number to help many more people.
Tobias Storch was diagnosed with a severe anaemia at the age of 13. For four years, Tobias’ family searched for a suitable donor, without finding one. When he passed away in 1991, the family started the Tobias Foundation and their work eventually led to the creation of a Swedish blood stem cell registry – the Tobias Registry.
Just a few months after the launch of the registry, a match was found between a donor and a patient in need of blood stem cells.
The word has spread and more and more people want to become donors. There are now 40,000 donors in the registry!
The 100th donation is taking place with a donor from the Tobias Registry.
In the fight against cancer, no one should have to fight alone. Junior’s friends saw to that.
When Junior Da Silva, 26, was diagnosed with leukaemia, his friends launched the “No one fights alone” campaign and organised a support gala in Stockholm. It was a loving and generous evening that brought hope – and hundreds of new donors joined the registry.
In 2013, we could follow Josefina Viira’s battle with cancer, which affects many people.
In March 2013, we received a letter from Josefina, 33, who was looking for a stem cell donor.
She wrote: “To see my children grow up is my greatest wish. But to get that opportunity, I need a donor, someone to save my life.” Finding a donor is not an easy task. In Josefina’s case, there was no one with matching blood stem cells in Sweden, or even in Europe. Eventually, a donor was found in the US who saved Josefina’s life by doing the most beautiful thing you can do for another person – volunteering to share yourself.
From previously using blood samples when signing up, we are now moving to using saliva.
16-year-old Ellen was dying of cancer and needed new blood stem cells. Donor Olof became her salvation.
Imagine the feeling of meeting the person who has saved your life. One such moving encounter occurred when Ellen met her donor Olof for the first time embracing in a never-ending hug.
All of hockey Sweden joined in when 13-year-old Oliver Mattson from Malmö Redhawks was diagnosed with severe anemia. When it really matters, we all play on the same team. The “Fight for Life” campaign brought together the Swedish hockey community to spread the word about the vital work of the Tobias Registry – from club to club, throughout the SHL. The commitment was huge from both players and spectators. Huge amounts of money were raised for research and the register was filled with 10,000 new donors!
As of December 2017, there are 100,000 registered donors in the Tobias Registry.
The Tobias Registry is celebrating 30 years with over 200,000 donors in the registry.
