The Tyler Foundation organizes fundraising events to help kids with childhood cancer and their families. The idea for the foundation was inspired by our son, Tyler Ferris’ two-year battle with infant leukemia. Even though Tyler received fantastic care at the National Center for Child Health and Development in Japan, we realized there was still much to be done to make life better for kids during treatment and make life easier for the people supporting them.
Children undergoing treatment for cancer in Japan are generally hospitalized for long periods of time – at least nine months and often much longer. This puts an incredible burden on the family supporting them. Most mothers go to the hospital daily, from early morning until their child goes to sleep at night. By necessity, their world becomes the hospital, even if this is at the expense of spending time with their other children. Another issue is that for the most part, in spite of undergoing cancer treatment, these children are happy and playful, and really want nothing more than to do normal kid things. So being in the hospital for such a prolonged period is both boring and isolating for them.
With this in mind, drawing from our own personal experience, and with the guidance of our Japanese medical advisory team we’ve identified 4 key areas in which we aim to make a difference:
- Children hospitalized for long periods: One specific fundraising goal for the Sports Extravaganza 2006 is to provide additional medical staff (oncologists or interns) at Tyler’s hospital – as a first step in improving the doctor/patient ratio so that it is more in accordance with the practice in other developed countries. The result will be improved care for patients, more consultation time for parents, and more time for research (and much-needed sleep!) for the doctors. In addition, we aim to provide improved educational and/or entertainment facilities for kids in hospital.
- Support for parents and siblings: We aim to provide access to counselors for parents. We will also create a weekend child-watching service near Tyler’s hospital for siblings of sick children, so parents can be more relaxed while attending to their hospitalized child.
- Provide financial assistance for diagnostic tests: The Japanese National Health Insurance System provides extensive coverage for healthcare needs. However, there are certain important diagnostic tests which are not covered, and can be crucial in guiding the course of cancer treatment. At present, doctors at Tyler’s hospital must use their own limited research funds to pay for such tests. We would like to establish a fund to enable freer access to these tests.
- Facilitating bone marrow and umbilical cord blood donation: Critical to the treatment of leukemias – one of the most common childhood cancers - is having a large population of potential bone marrow/cord blood donors. We aim to increase awareness of this and educate people on how they can become donors.
Most of these activities will start on a small scale, and will be launched at Tyler’s hospital, The National Center for Child Health and Development. This will establish a “model” to be replicated at other hospitals. We hope that if other hospitals realize what is possible to accomplish, they, too, will want our help in implementing programs.
In Japan, the number of registered nonprofit charities and fundraising organizations is increasing monthly, but NPOs are still a fairly new concept here. We hope the Tyler Foundation can be a pioneer in Japan - helping kids with cancer as well as demonstrating that a nonprofit organization can make a real difference in people’s lives.