Guest blogger about human rights in Romania: Empowering young patients to fight for their future

The Little People Association has been working for the past decade with children who are battling cancer in Romania.

The work initially started in one oncology centre in the North of Romania.  Our daily activities provided an escape from the treatment procedures that a young child or teenager had to endure – board games, movie evenings, painting, parties, playing and friendship  – anything that would give the children a resemblance of a normal childhood. With time many of the children and teenagers who had completed treatment would return either for check ups or to be readmitted for further treatment. We would hear their stories of trying to get readjusted to a “normal life” – some had spent years battling cancer and had lost touch with their peer group – many suffered from depression or felt isolated – some had been bullied at school for having cancer. Many felt ashamed of the changes cancer had caused to their physical appearance.

It was time to act!

Ambassador Harris participated in the Bucharest Marathon, in support of the Little People team and their campaign “Poti si TU”

In 2006 we formed a Club called Temerarii (archaic Romanian word for courageous) with 3 teenagers who had just finished treatment. The Club would keep in touch with kids once they have been discharged from treatment and create an avenue for support and friendship. Meetings would take place on a regular basis. The group grew and every teen discharged was a teen who would join Temerarii. Romania’s healthcare system is struggling with its finances. Providing patient support services is costly; helping young people readjust to life after treatment was just one of the many unmet needs of young cancer patients.

In 2008 due to the success of our work in one oncology ward we were formally asked to set up the same support program for children and teenagers being treated for cancer in the country’s capital, Bucharest. Temerarii was growing and the members were volunteering on ward, encouraging current patients. Amongst the medical community in Romania it was causing the revolution doctors had been hoping for. As one paediatric oncologist stated: “we can provide the treatments but Temerarii can provide hope”. In 2009 the Temerarii Club decided that everyone in Romania needs to hear that cancer is not a death sentence as often portrayed by the media – the Poti Si Tu!  (You Can Too!) campaign was born! Posters of young cancer survivors telling their story were created and Temerarii members set out to visit the 4 major cancer centres and 8 smaller wards across Romania.

Even on a global scale this was something so powerful and courageous, it was noticed by Lance Armstrong, 7 times Tour de France winner, cancer survivor himself: “The Little People Association is a leader in the fight against cancer in Romania through its efforts to empower teenage cancer survivors caught between the worlds of pediatric and adult cancer”, said Doug Ulman, President and CEO of the Lance Armstrong Foundation.  “The Association’s YOU CAN TOO! Campaign has been instrumental in taking action to improve the survival rates of this demographic.  As teenage survivors visit patients in hospitals across Romania, they offer critical support and encouragement to their peers fighting cancer,” Ulman said. “The Lance Armstrong Foundation applauds these acts of hope, courage and perseverance”.

The Poti Si Tu! campaign was funded with a little over 400 euros even won the Romanian PR award.

In 2010 the Little People extended their services to all regional paediatric oncology centres, now reaching 80% of all childhood cancer patients in Romania. The Temerarii Club not only provide volunteer force for hands-on patient support, counsel for developing future strategies and feedback on literature to be produced for this target group, but also raise money to help fund the development of services that are difficult to finance from public funds. Recently Temerarii raised the money to create a play therapy room in a major cancer treatment centre in Iasi, one of the regions in most need. Through the young people’s campaign, money is also raised for doctors to buy medicines and better, more precise equipment.

Temerarii is the story of a marginalised group finding their voice and combating the desperate needs of a failing healthcare system, determined to ensure that every child fighting cancer in Romania will have a future.

Shajjad Rizvi

Co-founder, The Little People NGO