She’s on a mission to raise funds for a local child’s transplant operation

‘In lieu of flowers…..’

I often glance through the obituary section of the Sunday paper. I enjoy the old photos… the little pieces of written history that follow. The most revealing part of a death notice is the last paragraph, the suggested recipients of donations in lieu of flowers. It tells a lot about a person… what they enjoyed in life, what disease they were battling, who they left behind. I guess it’s like a parting gift from the deceased (as they won’t be around to support the charity anymore).

Recently, I’ve had to give a great deal of thought to charities. Two years ago an 8-year-old classmate of my daughter came out of a play structure in tears and complaining of chest pains.

The physician diagnosed a cardiac arrhythmia, and prescribed some medication with instructions to return in a few months. Well, long story short, Cullen returned to the physician to find his cardiac function had deteriorated, resulting in pulmonary hypertension. He was quickly given a central catheter and now wears a pump to administer medication on a 6-minute interval to keep his pressures under control.

He was granted a “wish” and was flown to Washington, D.C., to meet President Bush during Bush’s final days in office. Yes, we all laughed about a 9-year-old boy who would rather meet a president with a 46 percent approval rating, than go to Disneyland… but it was his wish and he has some great pictures to prove it.

In early 2009, Cullen experienced a series of setbacks. His catheter became dislodged from his chest, requiring emergency surgery; he began experiencing panic attacks and his pump accidently shut down in class one afternoon. The Steeles were told by the Stanford team it was time to start fund-raising for a heart and double-lung transplant.

Cullen’s parents sent a group of people an email inviting us to learn more about COTA (Children’s Organ Transplant Association). Someone needed to step forward and be the community coordinator for Cullen’s fundraising effort. COTA estimated we would need to raise $75,000 towards out-of-pocket expenses for the two-year period leading up to, and following a heart-lung transplant. Money raised could be used to pay for any related expense. I prayed someone would take the position, so I could take the easier path of working more hours and just donating a big pile of money to the COTA account.

Here was a couple whose child had fallen down a well, and they were looking around the room and asking us for a rope, begging us for a rope, and apologizing for having interrupted our evening to watch the COTA video.

So I signed on to help them raise the money for Cullen’s transplant expenses. I’m scared of letting them down. What seemed like such an easy task now seems overwhelming. I envision having to oversee 24 first graders running a lemonade stand, 18 third graders jumping rope for an hour, and door to door solicitations holding a cardboard box with Cullen’s picture on the front.

It will be a lot of work, but I think the sense of community enveloping us will be our comfort later on. Cullen’s brother and friends will have the opportunity to wrap their arms around him in support, and reassure themselves in the process.

COTA restricts families from fundraising on their own behalf, so I will do what Colleen cannot do for her son. I’ll ask my family and friends to donate money. I’ll bully strangers and beg businesses. It’s not much, but it’s all I can offer. More time for Cullen to experience life, the opportunity to drive a car, kiss a girl (not my daughter), go to college, and all the other events that might take place over the next 10 years.

So what will my obituary read? I’m not sure what the future holds, but I believe the next 12 months are going to impact my life. I do ask this of you; don’t wait until someone dies to support what is important to them. If a neighbor, family member or friend sends you an email, or knocks on your door asking you to donate to a worthy cause, pay tribute to them now and write the check. I’m sure they’ll appreciate it more than flowers.

Amy O’Donnell-Riley is the Pharmacy operational supervisor at Auburn Regional Medical Center and the community coordinator for Cullen Steele’s COTA account (www.COTAforCullenS.com).