Alex: The Life of a Child
Alex: The Life of a Child
Cystic Fibrosis – below for more information.
Cystic Fibrosis
Alexandra Deford, a precious and precocious girl, was just eight years old
when she died in 1980 following a battle against the debilitating effects of
cystic fibrosis, the number-one genetic killer of children. Her poignant and
uplifting story touched the hearts of millions when it was first published and
then made into a memorable television movie. A new introduction contains
information on the latest cystic fibrosis research, and a touching postcript
reveal
Alex: The Life of a Child
on the button for more Cystic Fibrosis information and reviews.
Cystic Fibrosis Awareness
Cystic Fibrosis is a very serious genetic disorder which causes major lung and pancreas problems. We made this video to let you know that it is time that we, as global citizens, do something about it. Music Credits Celine Dion: The Prayer Ft. Andrea Bocelli : My Heart Will Go On Charles Clouser : Hello Zepp HOPE YOU LEARN SOMETHING!
Video Rating: 4 / 5
Tips:
Use the Power of Ignorance-on-Fire
Article by Mark Victor Hansen
“Ignorance-on-fire” is what I call those people who for whatever reason (need for the opportunity; change in occupation; desire to travel, win a new car, or to get some other reward; respect for you; hoping to generate new results; or because that person is a true believer in the product) are on fire with profound enthusiasm and have what is called a “Big Why” that overcomes all rejection, obstacles, and resistance.
A Big Why is an unstoppable need!
If you have a BIG WHY, you can overcome anything!
The husband of a lady that I know well left her and her kids. He left her with 8 and two children who had cystic fibrosis.
Cystic fibrosis is an inherited chronic disease affecting the lungs and digestive system. In most cases it means that the person may need at least one lung replaced, which costs a minimum of 0,000.
She had a Big Why. She had didn’t have any insurance that covered lung replacement.
She had no education, qualifications, rich relatives, foundation connections, or support system that would or could serve her.
She decided to have courage…#34;which means strength of heart…#34;and bravely set out to do what she had never done before and learn, master, and quickly manifest lots of money in network marketing, because her children’s lives depended on it.
She did what I will call “do-the-do” and mastered earning vast, fast cash to pay the enormous costs of her children’s treatment.
Amazingly, she made a fortune and paid for the operation.
She not only paid for the operation, she mastered herself…#34;the greatest challenge of all…#34;and is now busy raising 0 million for research, because researchers say with those funds, they can find a cure for cystic fibrosis.
She discovered a niche market in her problem. She enrolled other parents who had children with cystic fibrosis.
I say grow rich in your niche.
How close can one with Cystic Fibrosis be to living a “normal” life?
Cystic Fibrosis best answer:
It really varies with the person.
My boyfriend is very fortunate– he has a mild case. At 19, he’s only had to have sinus-clearing surgery twice (three times? I can’t remember), and is expected to live well past the 37-year median age of survival. There are many people that don’t ever make it to adulthood.
Most CF patients are at a nine. They take pills with every meal (pancreatic lipase, the number of pills is determined by weight of the person), which is more problematic for kids than for adults (for small children, the enzyme pills are mixed with applesauce or ketchup). Every other month, my boyfriend has a tobi-abuterol treatment he does twice a day (it’s an antibiotic and a bronchidilator, respectively). Women can still have children (men are generally sterile). CF patients can still play sports (sports and choir are actually encouraged, because of the lung exercise) and do everything else that others do. They can eat as much as they want, because they’re still going to be skinny. They lead normal lives.
What it takes to make them healthy: Exercise is the single most important thing. Adequate nutrition is the other–sure, they can eat all they want, but since they’re bodies are absorbing less, they need to eat more nutritionally-dense foods. CF patients are more prone to infection, and thus it is more important to stay active and healthy in the winter months, when infection is more prevalent in the general population
Finances are very hard. Insurance policies generally cover generic and brand name prescriptions, but what about “rare” ones? almost all CF prescriptions (Tobi, Creon-5, Abuterol) fall under that category. Insurance plans that require you to go to netwok doctors can be very frustrating–at my boyfriend’s last doctor appointment, we walked in of his doctor pulling up the Cystic Fibrosis Wikipedia page. We’ve been dating for several years, but have yet to get married because we can’t afford the health insurance (which is now covered by his mom’s work policy).
Emotionally, it’s hard on the family–CF awareness is very low, and it’s very hard to know that the love of your life will die before you have a 30 or 40 year anniversary with them. There are no drugs that have been tested and deemed safe for elderly CF patients, because there are not enough elderly CF patients to test them on. It’s hard for the CF patient to know that they have a shorter life, but not to really know how short that life may be. To be a CF patient, or to be close to one, is emotionally painful. Knowing you’re going to die, or that the love of your life is going to die, HURTS.
I know it sounds silly, but thank you so much for doing this project. Thank you SO much. CF awareness is ridiculously low.my best friend has CF and she she has it quite mild for now anyway. On a good day id say she’s about an 8 and on bad das maybe a 7.
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