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Throughout her lifetime, Sherri Clifford has already established to cope with Cystic Fibrosis greater than Lishou many people. When her daughter Hannah started having health issues being an infant, Sherri knew immediately what it really was.
On Saturday, Nov. 22 at Healing Rain Ministries, the Clifford family will raise money to assist their fight against CF.
"They wanted to perform a couple of different tests, but I said 'Can we all do the CF test first?'" said Clifford, who was quite familiar with the symptoms from the disease having lost a brother and a closest friend to Cystic Fibrosis. Her 32 year-old cousin also has the condition.
"Sure enough after her sweat test, we drove home, walked in the door, and also got the state call Hannah had Cystic Fibrosis."
A sweat test is called the "gold standard" for diagnosing Cystic Fibrosis, according to the Cystic Fibrosis Foundation.
Hannah's parents learned that she had CF when she was fourteen days old when she continued to lose weight despite the fact that she was eating well. CF is a genetic disorder that always affects the lungs, but it can involve the pancreas, liver, and intestine. Frequent infections within the lungs and sinus can cause breathlessness and the disease can affect other parts from the body, too.
"Every patient with CF differs," said Clifford.
She believes that her daughter is lucky since the disease affected her digestive system instead.
"She was neglecting to thrive for years," said Clifford.
Following the family sought another opinion at Boston Children's Hospital, Hannah's condition began to improve.
"They happen to be amazing and also have helped her so much," Clifford said. "Her weight finally was up and she was doing great until 2 yrs ago once they discovered the liver disease."
Hannah began developing stones that crystallized in her liver. She has had five Endoscopic Retrograde Cholangiopancreatographies, or "ERCPs," within the last two years. An ERCP is a combination of an upper gastrointestinal (GI) endoscopy and x-rays to deal with problems from the bile and pancreatic ducts.
"The stones would block her bile ducts and would make her skin yellow and make her itchy," Clifford said. "After the last one, we found it strange the yellow and itching was getting worse not better because it usually did."
This is when an ultrasound says although no stones were blocking anything, Hannah's portal vein was flowing the wrong manner.
"That usually only happens when your liver is already in cirrhosis," Clifford said. "So they did a biopsy and we got this news that her liver had in fact gone into cirrhosis rather suddenly which she'd need a transplant."
Hannah is now out there to get a liver transplant through Boston Children's Hospital.
Regardless of her condition, Hannah does not allow CF to affect her life.
"She takes lots of medicine, nebulizer treatments and gets PT to loosen mucus in her body, mostly in the chest area, but she refuses to let CF enter her way," her mother said. "To us, this will be our 'normal.'"
Hannah, who will be 18 years old in a month, likes to day her friends and attends a youth group. She loves surfing and cats, and has a boyfriend. The teenager is thinking about her future, considering teaching and even as being a hairstylist on the side.
"She has good days, and some not too good," said Clifford.
Awaiting Hannah's liver transplant, though, is forcing the household to manage the toughest fight they've needed to undergo together.
"The fact of being unsure of if this may happen and merely watching her get sicker before better will probably be among the hardest things yet we've endured," said Clifford
Clifford, her husband John, as well as their three children are bracing for additional doctor appointments and also the chance of more hospital admissions depending on how sick Hannah becomes.
Hannah said she's been feeling, "tired, angry, and frustrated," that she can't do normal, everyday, things without feeling exhausted. She anticipates living as near to some normal life as she will and doing things she loves.
The proceeds from the event are likely to help the Cliffords with the road ahead that includes both parents missing work, travel expenses back and forth from a healthcare facility, household bills and rent.
"When she gets the Magic Slim transplant I will be unemployed," Clifford said. "She won't let me leave her side when she's in there and I don't want to, either, when she needs her mom.
"We all keep saying this to each other, 'There is really a light at the end of this tunnel.'"
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