Eva had Cystic Fibrosis. At only one month old, she began to face a new kind of life, because Cystic Fibrosis (CF) has no cure. Yet.
Her parents, Susan and Tim Attel, as well as both sets of grandparents were also facing a daunting task of absorbing such momentous news, creating a new normal and helping Eva as best they could.
“When the doctor asked me if I wanted genetic testing while she was still in utero, I said ‘No, I had it done last time and everything was fine,’” said Susan of their first child, older brother Cal.
But when the news came that this was not just a wicked cold, they were all “in very much grief.”
“For me it was a death sentence,” said Betsey Attell, Tim’s mom. “Back in the day, there were so many children who died of unknown causes, so everything was just called ‘failure to thrive.’ We know so much more now, but I knew enough to know CF did not have a long life expectancy.”
But after they dried their tears, they rolled up their sleeves and got to work finding out everything they could about the disease and calling every contact they had. Given their professions, there were plenty.
Betsey was a senior vice president at Parkland Hospital for 20 years, although she is retired now. Susan is a nurse practitioner at Parkland. Susan’s mom is a nurse with a doctorate in educational technology and has access to cutting edge research. Husbands Tim and Tony are level-headed supports and sounding boards.
Eva has a rock star team in her family as well as at Children’s Medical Center. Her physician, Dr. Carolyn Cannon, is director of the CF clinic and heads a team of a half dozen professionals who care for Eva.
Cystic Fibrosis is, according to the Cystic Fibrosis Foundation, “an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States.” Lungs get clogged and food cannot be digested.
In the 1950s, few children lived to attend elementary school. Today, those with CF can live into their twenties but often need lung transplants and can develop diabetes. However, Betsey’s expert friends told her to be hopeful. Progress is being made continually.
“The cure is already out there,” she said. “It is not a question of finding the cure, but of funding it.”
To move toward that goal, Eva’s team has organized a silent auction to raise funds for research and awareness of CF at Betsey and Tony Attel’s church, Good Samaritan Episcopal Church, at 1522 Highland Road on May 12 from 6:30 - 8:30 pm.
Everyone is invited to enjoy music, refreshments and bid on items such as a Dallas Cowboys signed football, Southwest Airlines tickets, and multiple baskets and items from favorite Lakewood area shops and restaurants. All proceeds are tax deductible.
When talking with Eva’s mom and grandmother, it doesn’t take long to realize that there is something different about the way this family views their situation.
“Eva is not a problem to solve, and CF is not a fight,” Susan said. “It is something that we live with and have joy and meaning in the middle of it all.”
That was not the initial thought, however. It took the psychologist on Eva’s team to show Susan and Tim a new truth – that she was healthy living with her disease.
“That was a new idea for me. I thought she was very ill. Yes, we were in grief over what her life would be like now, but that grief did not last long” Susan said.
Both Attels say it was not a huge leap for them to mentally and emotionally embrace their story. They were already on the path to a synergistic world view in which each element had purpose.
As Betsey put it: “There is a wholeness to life. We all have particular gifts and purpose, and whatever there is in life is there and able to be fulfilled.”
Their family does not fight against or complain about the 24 doses of medicine and two lung treatments with a machine and nebulizer this 18 month old takes daily. Her brother Cal adores her and loves to play with and care for her.
“God is with us in this and he is with her. We are not victims,” her mother insists. “We enjoy our life – Cystic Fibrosis and all.”
And they want to keep enjoying her for a long, long time.
For more information on the auction or how to donate to the Cystic Fibrosis Foundation, go to cff.org/Great_Strides/evasalliance.