HEMBY BRIDGE – Community members are rallying to give a “second wind” to Sandra Cook, a Hemby Bridge resident in need of a double lung transplant.
Cook’s friends, family and others in the community will host a benefit car wash on Aug. 24, a Saturday, from 10 a.m. to 2 p.m. at South 21 restaurant, 11450 E. Independence Blvd. in Matthews. All funds raised will go to an account with the Children’s Organ Transplant Association in Cook’s name.
This will be the fourth annual car wash held at the restaurant for Cook; the three previous fundraiser raised thousands of dollars. Cook’s friends and family have held other fundraisers over the past several years, including Christmas tree sales, TCBY fundraisers and golf tournaments. So far, they’ve raised nearly $87,000 toward the estimated $125,000 cost of the double lung transplant.
“I try not to worry about things,” Cook said. “I’m very grateful for people helping out and doing this kind of stuff.”
Cook, who turned 53 on July 4, was diagnosed five years ago with Alpha-1 Antitrypsin Deficiency. “Alpha-1,” as it is widely known, is a genetic condition in which the body doesn’t produce enough of a protein needed to protect the lungs and liver.
Prior to her diagnosis, Cook often had difficulty breathing and was plagued with something her doctors believed to be recurring bronchitis. But further research showed signs of Alpha-1 – the condition that took the life of her brother in 2003 and father in 2005. Both died from liver complications. For Cook, the main problem lies within her lungs, although she’s recently shown signs of the early stages of liver complications.
The lifesaving double lung transplant was originally estimated to cost $85,000. But high levels of antibodies in Cook’s blood could be detrimental to the procedure, so she’ll have to undergo further treatments to lower the number of antibodies to make the transplant possible. The additional procedures bump the estimated cost up to $125,000.
Furthermore, the treatments will make her highly susceptible to illnesses. Cook’s doctors at Duke University Medical Center are waiting as long as possible to perform the risky transplant. Until then, Cook gets weekly chest infusions – something that costs anywhere from $8,000 to $12,000 per week.
“I’m still continuing to see (the doctors at) Duke,” Cook said. “They did a whole weeklong worth of tests for me. I’m not ready yet for a transplant … They said, ‘When you get to the point where there are no other things we can do, that’s when we’ll transplant you.’”
In the meantime, Cook’s “precious caregivers and volunteers” are staying busy raising money for the Children’s Organ Transplant Association, or COTA, in Cook’s name. Although Cook isn’t a child, COTA took her under its wing because Alpha-1 is a genetic disorder she’s had since birth.
All funds raised go into a COTA account in Cook’s name. She doesn’t have access to the money directly, but it will be there when it’s time for her transplant. And if something were to happen to her before the money is used, the organization will redistribute the funds to another COTA patient in need.
“There are no fees involved with COTA,” Cook said. “And if I can’t use it, at least I’ll be helping someone else.”
Since her diagnosis, Cook has devoted her life to raising awareness of Alpha-1. Although she can’t leave the house for extended periods of time due to the condition of her lungs and relies on her oxygen supply 24/7, she’s had several opportunities to speak at events and share her story.
About one in 2,500 people in the U.S. are affected by Alpha-1, and about 10 to 15 liver transplant candidates have Alpha-1-related abnormalities, according to the Alpha-1 Association. The organization also estimates 20 million people in the U.S. are undetected carriers of the gene that causes Alpha-1, and many may pass the gene on to their children.
Cook wants to use her own experience to encourage people to get tested for Alpha-1 so they and their family can be prepared if any Alpha-1 abnormalities are present.
“A lot of people don’t get tested because they think it’s something (related to) smoking,” she said. “It can (show up) at any time. Alpha-1 can affect your liver and/or lungs.”
So, what’s next for Cook while she waits patiently for her transplant?
“People do ask, ‘What’s next for Sandra? What’s going to happen next?’” she said. “Several years ago, I gave in to Godn and he’s in charge. So, I don’t worry about it; I want to enjoy what I have left.”
Find more information on how you can help Sandra Cook at www.CotaForSandraC.com. Find out more about Alpha-1 and how to be tested at www.Alpha-1Foundation.org/Get-Tested.