My Great Strides Story
Alaina's Warriors
Alaina's Warriors
First and foremost thank you for being here. Hi, I am Keisha and Alaina is my tiny warrior. Alaina's newborn screen came back "flagged" the day after she was born. This had me terrified. I remember when the pediatrician called me and told us that the next step was to have a referral sent over to the nearest CF center to have a sweat chloride test done. She was then diagnosed with Cystic Fibrosis at just 22 days old. I had no idea what was to come. However, I will say that her care team was so wonderful. They gave us so much information and resources in the beginning to ease our minds a little bit.
Alaina has the most common mutation(Delta F508). There is no cure for her disease. There is 25% chance any child we have will also have CF. There is a 50% chance any child we have will be a carrier. This being said Alaina's younger brother is a carrier of CF. Although she looks healthy on the outside this disease attacks the inside of her every day. Thick sticky mucus attaches to her lungs and other organs. She is also pancreatic insufficient.
A little light in on her everyday life. She has to do a vest treatment everyday with a nebulizer twice a day for 20 minutes. When she is sick thought we do this 4 times a day for 30 minutes. She has to take enzymes before she eats any foods that contain fat. These enzymes help her break down fat so that she can digest them properly. She has had to do all of this since the day of diagnosis. While her daily routine looks a little different than most we are so thankful to have our little warrior. We are also so thankful for everyone that helps work towards a cure for our cf community.
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
Alaina has the most common mutation(Delta F508). There is no cure for her disease. There is 25% chance any child we have will also have CF. There is a 50% chance any child we have will be a carrier. This being said Alaina's younger brother is a carrier of CF. Although she looks healthy on the outside this disease attacks the inside of her every day. Thick sticky mucus attaches to her lungs and other organs. She is also pancreatic insufficient.
A little light in on her everyday life. She has to do a vest treatment everyday with a nebulizer twice a day for 20 minutes. When she is sick thought we do this 4 times a day for 30 minutes. She has to take enzymes before she eats any foods that contain fat. These enzymes help her break down fat so that she can digest them properly. She has had to do all of this since the day of diagnosis. While her daily routine looks a little different than most we are so thankful to have our little warrior. We are also so thankful for everyone that helps work towards a cure for our cf community.
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
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