Grace

I've been wanting to write about Grace for a couple of weeks, but it's a tough one to even think about.

Three-year-old Grace Oughton was diagnosed with neuroblastoma, a particularly nasty form of cancer because it hits mostly children, at the age of 19 months. Most kids aren't diagnosed until they're Stage IV, which means that most will go through horrible rounds of chemo and radiation and surgery and hospitalization and nausea only to have their lives extended by a few months to, in a few cases, years.

I came to know of Grace at the end of last month. Her grandmother somehow knows someone who knows that my daughter works at Disney World. Grace's biggest wish was to go to Walt Disney World and meet the princesses. J doesn't have much pull with the Disney Organization, but by talking to people on duty that she knew, she was able to get Grace and her family a private meeting with three of the princesses. We haven't seen photos, but we hear that Grace was delighted to be held and hugged by the princesses.

The Make A Wish Foundation helps children with terminal illnesses achieve their dreams, but they only accept children who are at least 3 years old. Grace just turned three in June, so her request hadn't had time to make its way through the system.

After Grace and her family returned home, her online journal (see above link; scroll down a little) was updated to say that she had been brought home from the hospital to live the rest of her life in the comfort of her own home, with a request from the family for privacy. I've been checking the journal every morning and afternoon for updates since then.

Early yesterday morning, Grace lost her battle.

From the Loneliest Road Campaign web page:

"Standard treatment protocols around the globe offer little hope. Stage IV patients such as our children have a 20% survival rate. Innovations in immunological therapies have raised the bar however they do have complications. Recently it was brought to the attention of parents by the fields leading scientist's that a complimentary, far less symptomatic antibody could be manufactured, however the funding was unavailable. Depressed, angry, but excited for the possibility we asked how much would this cost? 2-3 million dollars! Ultimately this is the monetary value placed upon the lives of 150-300 children who could directly benefit from this antibody each year. " (bolding is mine)

Two to three million dollars is all it would take to get this treatment to the trial stage. Grace's father, and the fathers of six other children with neuroblastoma, have banded together to try to raise the money. It's too late now for Grace, really for all of the children who've already been diagnosed, but it offers hope for the little ones who will be diagnosed in the next few years.

I feel so helpless. Grace's story has touched me in a way I can't describe. I want to find a way to help. What? I don't know yet, but I'll find a small way to do something. No child--or their family--should have to go through something this awful.