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Welcome to Amanda Malloni's Page
Amanda Malloni
Amanda Malloni
I am participating in a 10-week fundraising competition to see who can raise the most money for The Cystic Fibrosis Foundation. Besides the fun of unleashing my competitive spirit to forward the momentum of an amazing organization, I have additional motivation to give these next few weeks my all. My son, Ayres, has a friend with CF, Lizzy. Ayres is thick as thieves with Lizzy and her twin brother, Daniel and practically lives at their house across the street from us. This has given us a front-row seat to see what this disease looks like. If you are like I was prior to meeting Lizzy you have heard of Cystic Fibrosis but may not know what it really is. Here is how the CF Foundation explains it…
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is over 50. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
What I have seen is a little girl who has been able to swallow handfuls of pills since well before I met her at 3 years old. She needs to take breaks twice a day for physical therapy and nebulized medicines. This has become a regular part of Ayres’ day as well since that’s when Lizzy, her brothers and Ayres get to play video games. “Therapy Time” as they excitedly cheer at 5:00 has also occasionally turned into adult happy hour where Lizzy’s parents and our good friends, Mike & Christy, have shared some of the struggles the kids are not aware of. They live in fear of an infection that could put Lizzy in the hospital and cause permanent lung damage. They spend so much time at Lurie they keep a bag packed at all times with games, books and snacks to help pass the time. The financial burden I know weighs heavy on them as they are self-employed and need to pay for private health insurance. I have also become aware of how much the CF Foundation has done for their family and the miraculous ground breaking medications that Lizzy has been able to take advantage of which as put her in a position to be able to keep up with Ayres and her brothers at every turn.
Needless to say, I want the best for Lizzy and all those with CF and therefore am motivated to do all I can to win this competition and help make CF stand for Cure Found! The other side of this however is that you may recall that my husband, Scribner, competed in this competition a few years ago and raised an amazing amount of money putting him in 2nd place for the competition! I was so proud of him and you all know how much I adore him, but… Let’s blow his efforts out of the water this year and go for the WIN!
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is over 50. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
What I have seen is a little girl who has been able to swallow handfuls of pills since well before I met her at 3 years old. She needs to take breaks twice a day for physical therapy and nebulized medicines. This has become a regular part of Ayres’ day as well since that’s when Lizzy, her brothers and Ayres get to play video games. “Therapy Time” as they excitedly cheer at 5:00 has also occasionally turned into adult happy hour where Lizzy’s parents and our good friends, Mike & Christy, have shared some of the struggles the kids are not aware of. They live in fear of an infection that could put Lizzy in the hospital and cause permanent lung damage. They spend so much time at Lurie they keep a bag packed at all times with games, books and snacks to help pass the time. The financial burden I know weighs heavy on them as they are self-employed and need to pay for private health insurance. I have also become aware of how much the CF Foundation has done for their family and the miraculous ground breaking medications that Lizzy has been able to take advantage of which as put her in a position to be able to keep up with Ayres and her brothers at every turn.
Needless to say, I want the best for Lizzy and all those with CF and therefore am motivated to do all I can to win this competition and help make CF stand for Cure Found! The other side of this however is that you may recall that my husband, Scribner, competed in this competition a few years ago and raised an amazing amount of money putting him in 2nd place for the competition! I was so proud of him and you all know how much I adore him, but… Let’s blow his efforts out of the water this year and go for the WIN!
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What is CF? The kids will explain!
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Lizzy's Throat Culture Today! Send Prayers!
This week is a big one for Lizzy and the reason I am participating in the @cff_chicago Chicago’s Magnificent fundraising competition. Lizzy’s CF causes excess mucus in her lungs which is a very hospitable environment for antibiotic resistant bacteria to grow. She gets quarterly throat cultures to watch for early signs of these bacteria. She has been very fortunate not to have cultured any of these bacteria, until this summer. She popped for a particularly scary one called Pseudomonas. If this bacteria takes hold in her lungs it is very hard to treat and causes permanent lung damage that ultimately results in lung transplants for people with CF. When this bacteria is detected people with CF immediately start an aggressive inhaled antibiotic for a month. A few weeks later they do another throat culture to see if it was irradicated. If not another month long round of antibiotics. These antibiotics are not your average antibiotic and can cause hearing loss with prolonged use which is what will inevitably be in her future. She got her follow up throat culture today and now we wait 2-3 days to see if the bacteria cultures. First I’ll ask you all to pray for Lizzy that her test comes back negative. Next I will ask you to donate. Donate $28 for the 28 of antibiotics she just finished, donate $60 for the number of minutes she does physical therapy every day to loosen the mucus in her lungs, donate what you can. These infections are a regular part of CF patients life so while this was Lizzy’s 1st infection it will not be her last. Help us make CF stand for Cure Found!
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Meet Lizzy!
You have seen my posts about competing in the Chicago’s Magnificent fundraising competition for Cystic Fibrosis. Well, Lizzy is why I’m competing. She is my son, Ayres, classmate and good friend. She has Cystic Fibrosis and as we have become close to her family we have gotten the behind the curtain look at what it means to have CF. Over the next few weeks I am going to share what I’ve learned. Keep an eye out for stories straight from Lizzy on what CF is and what it means to have it.
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