Charity, Destiny, and a Dedication to Living
By Becky Lerner
Jessica Cowin (left) photographed with her sister, Amy (right).
Imagine hearing that after five heart surgeries and a gallbladder removal that the next necessary step is a kidney transplant. Imagine taking twelve pills daily just to be functional. Imagine being poked and prodded and biopsied and psychoanalyzed in preparation for yet another highly traumatic operation only to have it cancelled… twice. Imagine that this is your life in order to maintain a quality of life. This is the life that Jessica Cowin, 27, of Northbrook, Ill. has experienced. However amongst all the pain and instability shines glimmers of hope, strength of family, community and love.
Year ends seem to have people reflecting and resolving, believing and donating. Terms like “charity” and “donation” pepper conversations at home, in the community, workplace, and media. It’s at the year’s end when most people set aside a moment to think about how they can contribute. Charity, for Jessica, came in the form of her younger sister, Amy. With the help of social networking, a little faith, and a lot of determination, Jessica and Amy have experienced, on many levels, what “giving” really means.
Jessica was born with a rare condition called Hypoplastic Left Heart Syndrome (HLHS), which occurs when there is a defect or a developmental problem in sections of the heart during the first eight weeks of pregnancy. Modern technology and ultrasounds allow doctors to detect HLHS sooner, but in Jessica’s case, the apparent urgency of her condition wasn’t clear until after she was born.
“They said that if she hadn’t gone through surgery right away” Jessica’s mother, Eileen Pearlman, says, “she probably would have only made it four to six weeks.”
Jessica had her first segment of the three-stage surgery called the Fontan Procedure when she was just four days old. At the age of 13, she returned to the operating room for a pacemaker. By 16, she was diagnosed with congestive heart failure and put on a waiting list for a heart transplant. The estimated wait time for a heart was roughly a year, but for Jessica it only took three weeks to find a match.
“I don’t know how I got a heart so fast. Maybe it was the match, maybe it was timing, I really don’t know,” Jessica says. “Kids usually get called first though.” But her luck was paired with disappointment.
She, Amy, and her mother had planned a trip to New York in an attempt to have some fun.
“I was livid,” Jessica says. “I wanted to go to New York. So my mom was trying to get me and Amy in the car and down to the hospital. I was really upset and didn’t want to go. Amy was like ‘I’ll even promise you I’ll go horseback riding with you if you go!’ and so I just went. I’m still waiting to collect on that,” she says with a smirk and an emphatic wag of her finger.
Post-transplant, Jessica was put on two immuno-suppressants to decrease the risk of rejection, each had potential side effects. But when Jessica began experiencing extreme stomach pain and migraines her doctors were unconcerned.
“We were in and out [of Children’s Memorial Emergency Room] every week twice a week and it was very painful. It had been mentioned in passing in one office visit that the medication and heart stuff affects your gallbladder. They did tests, nothing came back. So the doctors kind of blew it off,” recalls Jessica.
Finally, she saw a stomach specialist who determined that one of the medications had damaged her gallbladder. The doctor noted that with her history and her current conditions, next logical step was to remove it. The surgery went smoothly and almost immediately upon recovery, Jessica felt better.
The next 10 years were generally uneventful and allowed Jessica to return to a relatively normal life. But then, during a routine heart biopsy almost ten years after her transplant, the doctor noticed increased levels of creatinine, suggesting diminishing kidney functionality, in Jessica’s tests. She was immediately referred to a nephrologist. Within three months, she needed a kidney transplant. But complications with insurance caused enough delays that she wound up in renal failure.
She began dialysis while she submitted to her insurance company for the transplant. Amy began her tests for compatibility. Jessica’s claim was denied; her insurance company only covered $30,000 in organ transplant fees per year and her kidney transplant would cost upwards of $100,000 not including the necessary five pre- and post-surgical treatments which cost roughly $30,000 each. The hospital cancelled the surgery, which is when Amy stepped in.
“I really thought I was going to lose her,” Amy says. “I know she doesn’t give up. But it was shocking and I had to do something.”
Amy started a fundraiser through GiveForward.com, a small, public fundraising company she heard about through friends. She contacted the founders of the company with an essay-like email followed by questions.
The next day, co-founder of GiveForward.com, Ethan Austin, called Amy back. She set her goal at $100,000.
“I filled out all the forms and then went to get coffee with a friend. And by the time I got back there were donations of $10 or $20 from random people, and friends. I think I sent an email to 50 people or so and there were donations from them… and then there was an anonymous donation for $5,000.”
With Ethan’s help, she advertised through the website and through Facebook, reaching out to her family and friends. Ethan connected her with newspapers like the Chicago Tribune and USA Today, which raised awareness. Within three months, Amy had raised $31,000 just on GiveForward.com while other donations were made directly to Jessica’s medical trust fund. The two totaled approximately $44,000.
“They took on some of the fighting for us and with us so we didn’t do it ourselves,” Jessica says. “Even though we didn’t raise the amount of money Amy was asking for, it didn’t matter.”
The surgery was rescheduled but Jessica’s new insurance once again refused to cover it claiming that the fundraiser was considered Jessica’s personal income and, based on that criterion, she was ineligible for coverage. With much fighting and frustration, and with the help of publicity, the miscommunication was sorted. Amy finally tested as a match for Jessica and donated one of her kidneys to her sister on April 2, 2009. The current waiting period for a kidney that Jessica would potentially have undergone, had Amy not been a match, is five years.
“Working with Amy and Jess was truly inspirational,” Austin says. “It was easy to see how much the sisters loved each other and how dedicated Amy was to helping her sister get the help she needed. Both of them have remarkable courage to take on the system like that.”
Thanks to GiveForward.com, the Facebook community, and that anonymous donor, Jessica is doing great. The family feels supported and connected now, and Jessica is learning about more and more cases of children with HLHS being treated earlier than she had. Eileen has been receiving Facebook messages from parents with children with HLHS looking for support.
“Social networking now is amazing. There was nothing like this at the time [when Jessica was a baby]. There were a few people that I talked to but there were no support groups. If people contact me on Facebook I’m so happy to talk to them. I’m not going to tell them it’s easy, because it’s not. But I’m happy to talk to them,” she says.
Jessica is currently in great health and has since rejoined the workforce. She has begun writing a book about her life, including her medical struggles and the profound impact friends and family had on her. She volunteers as an advocate for GiveForward.com, and is still fighting to drag Amy to a stable for some horseback riding. But, Jessica maintains a realistic perspective.
“Plans for the future are tough. I foresee no more transplants, fingers always crossed. I try not to spend too much time focusing on the future anymore,” she states. “Just try and take it a day at a time. My hopes are to finish this book, and continue to work as an advocate with GiveForward and other medical organizations.”
For more information on Hypoplastic Left Heart Syndrome, visit mayoclinic.org or childrenshospital.org. Donations are always welcome on GiveForward.com, as well as joining the HLHS community on facebook.com.
What a wonderful story. I feel honored to be a part of Amy and Jess' life!
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