Meet the Oughton Family
- Alec, 40, Fire Captain and paramedic
- Crystal, 33, Neonatal Intensive Care Nurse – RN
- Landon, 11
- Grace, would have been 9
- Lillyanne, 4
When was the Grace Oughton Foundation established?
In 2006. It was set up by friends to support our family. Their support is what motivates us to pay forward that same kind of help, as well as develop programs to meet needs that did not exist when we were in treatment.
Who was Grace?
Grace was a kind, gentle, "dainty" little girl. She loved her big brother. She loved to be a princess and, when she grew up, she wanted to be a princess-firefighter and a moose hunter (don't ask, I'm not sure). She was an accomplished fisher-woman, catching a trophy (for her) Crappie out of a pond behind our home while in treatment. She wasn't scared to get dirty, but loved to have her fingernails painted and to wear princess dresses and jewelry. She was a huge fan of Ramen noodles, Parmesan cheese and the marshmallows from Lucky Charms.
How old was Grace when she was diagnosed?
19 months old. This is a pretty typical age for Neuroblastoma.
How difficult was the diagnosis to accept?
Devastating. I had a few choice words for the first doctor who suggested cancer as a possibility. I think both of us felt some sense of failure that we had failed to protect our child from this disease. It is not really rational, but it was real. We searched our pasts, places we lived, things we had done, and places we had worked to try and find a cause. It was difficult feeling like we had done something to cause this diagnosis. Again, irrational, but pretty common feelings.
How did Grace take it?
She kept a positive outlook, communicated effectively what she needed, and helped with whatever she could.
What was life like knowing that Grace's time would be short?
We always had hope that she would be one of the few who survived. It was terrible knowing that we would not be able to take pictures of her going to school, to prom, to college, or to the altar. We would not see her play sports, or sing or dance in a recital. We tried to do some of that with her before she died. Those are still some of our best memories.
Following Grace's passing, what was the grief process like?
Initially, we didn't know what to do. For almost two years, our lives revolved around doctor's visits, chemo, central line care, labs and pain meds. Now we had nothing to do, but feel the pain. We have spoken with many families about this process. The only positive words I could give a family dealing with the death of a child is that eventually the sharpest pain will fade. Unfortunately, you will always have a dull ache that will well up into overwhelming emotions at the drop of a hat.
Tell us more about the foundation?
Over the years, we have grown the foundation to serve a variety of purposes. All services provided by the GOCF are free of charge.
• Direct assistance grants to families
• Periodic research grants (totaling $395,000 to date)
• SibVentures – Support groups for children and teens dealing with the loss of a sibling to illness or trauma
• SibzCare – Support groups for children of teens living in a household with a brother or sister who suffers from a life altering illness.
• Tutoring program – Provided for area children in treatment, or recently post-treatment, to assist them in keeping up, or catching up with their school-work.
• YMCA Cancer Fitness Program – Funded certification training for "Y" staff and cover any fees associated with one-on-one training for children in treatment, or recently post-treatment.
• Budding Mobile Lab Project – We are awaiting a decision on a grant submission to provide funding to purchase lab equipment for a mobile lab. This resource would be available to families at convenient times to help them get results and plan their day/week, maintaining some sense of normalcy in the chaos of cancer treatment.
How many families have you helped?
This year — over 40 families.
Why is it important to support families fighting pediatric cancers?
Families fighting pediatric cancer are immersed in the fight. Because of this, they have little ability to look outside that world for help, or to fight for themselves. Additionally, because pediatric cancer is rare, little resources are committed to deal with the clinical, psychological, and social by-products of these diagnoses. Most families also have to travel for competent care, which further complicates the situation.
Tell us about the 2013 Race for Grace.
The Race for Grace, in its eighth year, is our flagship fundraising event. It is a family-oriented event with something for all ages. There are four separate events and the entire day has a firefighter theme.
• The Rookie Run is a 300-yard fun-run for kids age 5 and under.
• The Race for Grace is a 5K chip-timed run/walk on a certified course.
• The Fireman Chase is a 1-mile chip-timed event for children between 5 and 12.
• The last event is the Extreme Firefighter 1-Miler.
How can the community help?
We are always in need of volunteers on the day of the event.
Anything else you want the readers to know?