The People Behind the Disease - Part 2

Supporting a Child with a Genetic Condition: An Interview with Tracy Wirtanen

We were lucky enough to have a conversation with Tracy Wirtanen, the founder and CEO of the Littlest Tumor Foundation . The organization serves to benefit the children and families living with neurofibromatosis (NF), a genetic disorder that causes tumors to grow on the nerves throughout the body, especially in the brain and along the spine. In addition to being the founder of Littlest Tumor Foundation, she is also the mother of a child with NF. Tracy talked with us about the importance of having a support system around your child, what she would tell families struggling with a new NF diagnosis, and the most challenging (and rewarding) parts of her work. Yael

Why is it important for children living with NF to have a strong support system, both inside and outside the family?

It is vitally important. The larger NF community can be a great resource for information, caregiver support, and the normalization of neurofibromatosis.

After running a foundation for more than five years, Ive seen how medical issues in a child can make or break some families. Sometimes support comes from family, sometimes the NF community, or other places. Personally, as an NF mother, it is so therapeutic for me to be able to speak with other NF moms.

What is something you would tell families of children who have been recently diagnosed with NF (or any chronic condition)?

You will get through and even meet some amazing people. There will be difficult times, but you will find the strength.

Reach out to support in the NF communities but remember that another persons experience will not necessarily be your own. While we dont have all the answers yet, but NF researchers are positive about discovering effective treatment options.

What can they do to better prepare for life after a genetic condition diagnosis?

NF is the most common genetic disorder linked to a single gene. We know what causes NF, but standard protocols need improvement. This is because NF manifestations are so varied. Seek out doctors and NF specialists who understand NF. There will be many opinions. Go with the specialist of what youre dealing with. For example, consult an endocrine specialist for endocrine issues.

Advocate, advocate, advocate for your child in school!

An individualized education program can be essential to your childs success. Dont assume your schools special education teacher will know about NF challenges, so bring factual, clinical information to your childs IEP meeting. Consider having a neuropsychology evaluation. It will suggest reasonable accommodations and strategies for success.

What kind of advice do you have for families living with NF who may have not found a strong support community yet or do not have local resources to do so?

They are just a phone call, mouse-click or email message away; they can connect into the NF community; there are many nonprofits that support families. Talk to the genetic counselor at their hospital as well, because they can point families to resources.

Has technology changed the way people are connecting with each other and sharing information about condition management?

Most definitely, it is great people can reach out to one another. There are many groups people can go to and discuss issues. Its also great that medical journal articles are at your fingertips. But there are also some drawbacks, such as incorrect OR INCOMPLETE medical advice from lay people. It is possible to become overwhelmed. Seek out medically accurate information from reliable sources such as the National Institute of Health (NIH), the Childrens Tumor Foundation (CTF) or the NF clinic at Washington University.

What do you consider to be the most profound/inspiring part of your work?

First, the children at our NF Family Wellness Retreat. The entire retreat actually. Joy, Joy, Joy. In our survey for children we hear: "I met my first friend. or I fit in. We had a talking circle with NF kids, and the person leading it asked: "Who here has had a tumor? They whipped up their shirts to show scars, showed them on their heads.... priceless. The retreat is so empowering to the entire family. The moms circle gets very real, and everyone really gets each other. Heads are shaking yes all while someone is speaking. Our drumming, yoga, massage, canoeing, and meditation bring the magic. We have a chef that cooks healthy food with love.

Second, our advocacy for NF research funding is also very inspiring. My strong commitment to NF research funding began at the Ronald McDonald House in Chicago the eve of my son Sami's surgery. He was to have a fast growing plexiform tumor removed. I sat in the dining room in somewhat of a dream state. I continued through the night to go through the five stages of grief - all of them. I began making deals with God. I realized afterwards that I am not unique and many people have sat in the Ronald McDonald House or other waiting rooms making deals. We can do better.

EVERY DAY there are success stories in medicine. I can be part of the solution and invest time and effort in advocacy to make sure NF research continues to be funded. The Littlest Tumor Foundation has made great efforts in advocating for federal research funding.

Anything else youd like to share about your experience?

I am a better person because of my childs diagnosis with neurofibromatosis.

Tracy Wirtanen is the founder and CEO of Littlest Tumor Foundation . She is a passionate advocate for neurofibromatosis awareness and research funding. Tracys efforts have resulted in bipartisan support for NF funding, an inclusive NF Family Retreat model for families, and the NF Collective Impact Initiative that has brought 8 NF nonprofit organizations to the table to scale impact. Tracy served in the US Peace Corps in West Africa, earned her masters in social work from McGill University, and completed an executive education certificate from the Kellogg School of Nonprofit Management.

The Littlest Tumor Foundation is first and foremost a foundation working toward a future treatment of tumor growth in children. The foundation has three simple goals: (1) to create NF awareness, (2) to empower families with our NF Family Wellness Retreat, and (3) to advance and advocate for research.