For Mother�s Day - A Mother�s Determination
by Tom Purcell (more by this author)
Posted 05/09/2007 ET
Updated 05/09/2007 ET
It was 1994. She thought she’d heard a faint wheezing in her baby’s lungs. She took her baby to the doctor right away, who sent her to a specialist.
The doctor said it was nothing -- probably a touch of acid reflux. He said it was common for new mothers to overreact. He said he’d run some tests to be safe.
Later that night, she was preparing for bed. The phone rang. It was the doctor. Her daughter tested positive for Cystic Fibrosis.
The doctor warned her not to panic. The tests could be wrong – he’d run them again the following day. He warned her to avoid reading about the illness until it was confirmed.
But she couldn’t wait. She threw a rain coat over her pajamas, grabbed her sleeping baby out of her crib, then rushed out to a late-night book store. As she cradled her baby in her arms, she read everything she could about CF.
It is an hereditary disease that causes a child’s lungs, intestines and pancreas to become clogged with thick mucus. It is fatal. She’d be lucky if her daughter survived into her 20’s.
She broke down in the book store. She slid to the floor, crying uncontrollably as she held her baby tightly. She cried as though her baby had already been taken away.
The doctor confirmed the lab results. The pain was unbearable. She and her husband did not know what to do.
She reached out to a friend. Luckily, her friend knew plenty about CF. She knew former NFL star Boomer Esiason and his wife Cheryl. They have a son with CF. They’ve done extensive fundraising for the Cystic Fibrosis Foundation, and now head their own foundation.
The Esiasons contacted her right away. They understood her pain well and consoled her. They shared everything they knew about the illness.
She was instantly transformed. She began channeling her pain into mastering CF. She learned how to apply medications and treatments to give her daughter the best hope.
She learned of CF’s other challenges, too. Though there are 30,000 Americans who suffer from the illness, the number is too small to spur drug companies to do research. The CF market cannot generate enough revenue to recoup the millions needed to develop new drugs.
So she took the bull by the horns. She quit her job and jumped into the CF fundraising business full time. She joined boards and chairs events. She gives speeches wherever she can.
The money she raises goes to the Cystic Fibrosis Foundation. It hires its own scientists to advance its own medical breakthroughs (90 percent of the funds raised go directly to research). Thanks to so many just like her, the average lifespan of a child born with CF has jumped to 36.5 years.
But that isn’t good enough for her. In 1998, her second daughter was born with CF. There was only a 25 percent chance that she and her husband, both CF carriers, would have another CF child, but fate struck again. They felt unbearable pain again.
Every day is a battle for her now. Every day, her girls must take a collective 34 pills and an array of oral medicines. They must complete 10 breathing treatments and six 30-minute therapy sessions. The treatments and medicines are designed to extend their lives.
Every day, she works tirelessly to raise money to advance any technique or medicine that might extend a CF child’s life a little longer -- that might, if promising new research goes as hoped, cure this dreaded disease.
Hers is the story of a mother’s love -- a mother’s powerful determination to breathe life into thousands of children.
Her name is Angela Kinney and she could use a little help. She’ll be participating in the Great Strides walk in Pittsburgh on May 20th (an event that is held throughout May in cities across America). To contribute to her efforts go to www.cff.org/great_strides/angiekinney or contact her directly at firstname.lastname@example.org.
You might want to wish her a Happy Mother’s Day while you’re at it. She’s certainly earned it.
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