Heroes wanted! – #saveLarissa

Today the Daimler blog will not be about cars, technical features or the future of mobility. It will be about the survival of my daughter Larissa. She urgently needs a bone marrow transplant.

In order to register at the DKMS as a stem cell donor, all you have to do is to provide a swab sample of the inner lining of your cheek and sign a consent form. This effort, which will take only a few minutes, could save the lives of not only my daughter but other people as well.

That’s why I’m asking you to do something very concrete — participate in our large-scale registration campaign.

Sunday, March 4, 2018
from 11 a.m. to 4 p.m.
GAZi-Stadion auf der Waldau
Guts-Muths-Weg 4, 70597 Stuttgart

Please pass along this information to others. Basically, every healthy individual between the ages of 17 and 55 can register as a potential stem cell donor. A cotton bud will be used to take a swab sample of the mucous membrane on the inside of your cheek. This sample will then be tissue typed in order to match you to possible recipients. This will take only a few minutes.

Each tissue typing procedure costs DKMS €35. Because DKMS is a nonprofit organization that depends on donations to finance its fight against leukemia, a financial donation will also help. Every euro counts!

DKMS account for donations
IBAN DE88 6415 0020 0002 3337 37
Key word: Larissa

From the nursery to the hospital

But now, back to the beginning of our story: At the end of last year, my daughter Larissa (who is eight years old) became paler and paler. The bruises on her body from sports and playground activities became larger and bluer, and she developed mysterious red spots all over her body that looked like big red freckles. These symptoms alarmed my wife and myself, and we took Larissa to a pediatrician for a checkup.

On January 3, the disturbing lab results of her blood test suddenly transformed our bright and athletic third-grader into a patient, and she moved from her room at home to the hospital. Many tests and bone marrow samples later, she was diagnosed at the end of January with MDS (myelodysplastic syndrome), a disease of the bone marrow. The blood-building system in her bone marrow is more or less “broken.”

All of a sudden, family life is upside down.

This diagnosis has thrown our family life into chaos. We had previously been a completely normal family of five, with three wonderful daughters. Our daily life took place between the primary school and the kindergarten, driving the girls to sports practice, and making sure they did their homework and tidied up their rooms. It was a typical family life.

But now everything’s different. My wife and I have divided up the responsibilities. She accompanies Larissa on her regular visits to the hospital, where her blood counts are checked twice a week. Once a week Larissa gets a blood platelet transfusion. As a result, her life currently depends on blood donations.

Between home schooling and relief action

For my part, I’m closely involved with a team that is organizing a major registration campaign for donors. On account of her weak immune system, Larissa is not allowed to go to school. With the help of a teacher, we’re trying to compensate for that through home schooling and homework. Apart from that, we try to make sure that our three girls’ lives are continuing normally. For example, Larissa can receive visits from her friends, but only if they’re in good health.

Her only chance to regain her own health is to receive a bone marrow transplant. Unfortunately, none of the members of our family are good matches for her. As a result, Larissa will have to depend on a stranger’s bone marrow donation. Without this assistance, this wonderful girl will not grow up to become a woman. On her behalf, I’m asking for your help. Please register as a bone marrow donor, for example at DKMS! The more people act as “angels,” the more opportunities will there be for Larissa and other children in similar situations to survive.

My wife and I with Larissa (M.) at a newspaper interview (Source: Lichtgut/Achim Zweygarth)

How the registration campaign was organized

After Larissa received a diagnosis of MDS, my wife and I quickly realized that we would have to give up our previous efforts to keep our children away from the social media. On the evening of January 31, we posted a text and a photo of Larissa publicly on Facebook, Instagram, Twitter, LinkedIn, and Xing. We also sent this information to all of our WhatsApp contacts.

That’s how we made sure the message would be distributed very rapidly. After just two days, I was contacted by DKMS, because their online registrations for tissue typing (https://www.dkms.de/en/become-a-donor) had increased by leaps and bounds. My Facebook post, which was shared by more than 120,000 users, was obviously the reason for that.

Understandably, DKMS also has a great interest in having many people participate in our registration campaign. As a result, DKMS employees have helped us with our planning — now there’s even a “Guideline for the Public Registration Campaign.” In just two days, our organization group was complete.

The whole process has been very similar to Leadership 2020. The group consisted of very different kinds of people: friends from our immediate surroundings, relatives, old friends from our school days, and soccer friends. Our mission was clear: organizing a registration campaign. However, the path to our goal was completely undefined.

The Kickers make way

A few days later, we met with a representative of DKMS. It quickly became clear that the possible event venues in our immediate environment would not be big enough to accommodate the large group we aimed to attract. Here the Stuttgarter Kickers soccer club came to our help. Because of my many years of volunteering as a department head, I have very good contacts at this club.

Within a few days, through these contacts we received approval for the free use of the VIP area of the GAZi-Stadion. In parallel, through other contacts we gained two sponsors: Dr. Susanne Eisenmann, the Minister of Culture of the federal state of Baden-Württemberg, and Jürgen Klinsmann, the World Cup-winning soccer player.

20.000 flyer, 400 poster

In order to publicize our story even more widely, we’ve introduced the hashtag #saveLarissa, and set up the Facebook page and the website. Every member of our organization team brought in a different set of capabilities and contacts. That enabled us to attract further prominent supporters very quickly. The message about the registration campaign and the flyer were shared on Facebook and Instagram by a number of prominent personalities:  Mario Gomez, Sami Khedira, Timo Werner, the German national soccer team, Robin Dutt, Sarah Winkhaus, Ulli Potofski, and the Stuttgart-based YouTube stars Lisa and Lena.

Parallel to the online world, the printing company Druckhaus Waiblingen printed 20,000 flyers and 400 posters for us free of charge. We’ve distributed these flyers and posters all over Stuttgart and in the Daimler plants. The Ströer company is supporting us with video ads at all commuter train, subway, and train stations and at shopping malls.

The media also became aware of our activities very quickly. Last week the newspapers Stuttgarter Nachrichten and Stuttgarter Zeitung published reports. There will also be a report in the BILD newspaper. In addition, the Sports 1 TV channel has reported on our campaign, Regio TV will broadcast a report this week, and the SWR Fernsehen TV channel has promised to participate on our campaign day next Sunday.

source: RegioTV

We’ve got about 120 helpers for the registration event. Our sincere thanks go to all of these people, the Stuttgarter Kickers, and the church community. Another big “thank you” goes to our employer for its support!

I’d like to take this opportunity to send a heartfelt greeting to the entire organization team. Without your great support we would never have been able to make this monumental effort.

I’ve set up a #saveLarissa group on the Social Intranet: https://social.intra.corpintra.net/groups/helden-gesucht-savelarissa

Update 20.03.2018: Hero found

We received good news: A suitable stem cell donor was found for Larissa. We wish the family all the best

Additional information:

This is where the typing action for Larissa takes place:

Sunday, March 4, 2018
from 11 a.m. to 4 p.m.
GAZi-Stadion auf der Waldau
Guts-Muths-Weg 4, 70597 Stuttgart

Your help is necessary because only every third blood cancer patient has a suitable donor in his family. That’s why you can register as a DKMS donor anytime, free of charge and uncomplicated HERE.

Steffen Müller works as a purchaser at MP/XD3, where he is responsible for glazing for the S-Class, EVA2 Europe, and AMG. In parallel, he is also involved in the MP Swarm for Digital Transformation as part of Leadership 2020.