Community is key for Katie Rizvi

With a flash of blonde hair, a twinkling smile, and a warm, friendly voice, Katie Rizvi makes an impression in every room she enters. Katie was born in Hungary and joined her husband in humanitarian efforts in Eastern Europe in the 1990s. This month, her English husband Shajjad Rizvi received an MBE for services to charity and to the British business community in Romania. He and Katie have been working for decades to make a change for children and teenagers across Europe.

Katie’s career began at the United Nations High Commissioner for Refugees (UNHCR) in a placement centre, better known as a refugee camp, in southern Hungary. But in 1993, everything changed when she found out she was pregnant. She couldn’t work in a warzone anymore but still wanted to make a difference.

Katie formed a group of young people who had a strong interest in arts and humanitarian work, while she was coaching in the camp. “We were little people who believed that taking little steps and doing little things can actually make a big difference.” And that’s where the name came from. Asociatia Little People Romania was born.

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It was working in Transylvania that she first met child cancer patients. “I saw the same signs of isolation and trauma in their eyes as I have seen in some of those children’s eyes that I worked with in the refugee centre.”

She and the group went into hospitals with no psychological or emotional support systems in place and collaborated with local universities to develop a complex psychosocial programme that has been running for nearly 20 years now. “It’s the basis and foundation for everything that I’ve done in my life,” Katie says. The programme is employed by 23 psychologists around Romania, meaning that around 2000 children with cancer benefit from the programme annually.

The mascot, the brave lion, is a part of everything they do, including their starting kits for when the children first come into their service. The kit, developed by Asociatia Little People Romania, is made up of a backpack with plastic medical tools and working stethoscopes for the children to play with and activity books to complete with their parents and psychologists. While they cuddle their brave lion soft toy, they can learn all about what they’re going through, what the doctors do, and why. The group were also able to set up playrooms in hospitals with TVs and Xboxes for the children and teenagers to live like all children do.

For children 12 years old and above they create comic books, taking the reader through the lives of a teenage boy and girl going through the effects of chemotherapy. While many programmes only consider the medical effects, Katie made sure they were supported emotionally, talking about body image, social lives, and self-esteem.

But Katie noticed not enough was being done for older patients. “I had a very special interest in teenagers. Our psychologists are very kind and very good but most of their time gets taken up by the younger children, so we really needed a separate service line for teenagers and young adults.”

Little People have had hundreds of patients go through their service telling them that they had trouble adjusting to life after cancer. What Katie realised is that they needed a community. Collaborating with local Romanian survivorship groups, Katie had a hand in forming Youth Cancer Europe (YCE), which is now 800 members strong. “It was born out of a notion that young people need a community. They don’t need a psychologist.” Ambassadors for YCE work all across Europe to campaign and make a difference in their communities.

Youth Cancer Europe

A map of where the Youth Cancer Europe ambassadors are based across Europe.

Katie begins her day very early, spends 45 minutes on the treadmill, then makes a cup of tea.  She sends emails, has conference calls and consults with European forums on international projects.

Both YCE and Little People hold events throughout the year, so a lot of Katie’s time is spent preparing. “I connect with a lot of people and gather a lot of evidence and stories and real-life examples across Europe.” Her event focus for YCE in July is on the cross-border health care policy, so she works to “really represent their reality as opposed to what the European directive should be by permitting access to all patients across Europe.”

In the past, Katie has campaigned at the European Parliament in Brussels, held YCE’s ‘Incubator’ event to brainstorm ideas in Romania, and is planning a meeting of YCE members in Budapest over summer. Her next trip to Brussels is about their policy on fertility issues for cancer patients. For Little People, she held a weekend event to teach their volunteers “what it means to volunteer with children, work with a vulnerable group, and work within a hospital setting.” One of their most recent campaigns is #removelabels, where they want to give cancer patients the ‘right to be forgotten’. It is an issue that affects their ability to get insurance, as well as the ability to adopt or have children, travel and affects job seeking.

Katie Rizvi’s life never stops. Every day she’s busy working to make a difference in young cancer patients’ lives. Yet between her mass of phone calls and meetings, she still finds time to spend with her family.

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