My Great Strides Story
Kelsey Ditzler
Kelsey Ditzler
Odesa was diagnosed with CF at 2 weeks old. She was born 4 weeks premature with a Meconium Ileus, in Las Vegas NV. At 6 days old she had 20cm of her small intestine removed, and after 3 months in the NICU we had a GTube placed and she was able to go home!
After spending her first 11 months of life in the desert, our family opted to move to Idaho to be closer to Grammy and Grandpop.
The transition had a bumpy start with our first culture containing pseudomonas. But after a round of antibiotics, Odesa was able to heal up quickly. Odesa is now a year and a half and she is thriving! We haven’t had any hospitalizations, and attribute that to starting Orkambi at 1 year old. Orkambi is a modulator drug that has been FDA approved for children ages 1 and older. When she turns 2 she will be eligible for Tricafta, another very important modulator drug that has significantly increased the lifespan of patients with CF. As incredible of a feat this is, only patients with certain gene mutations are eligible for these life-saving medications. That is why we need to continue to fight and raise awareness so eventually we will find a cure for ALL patients with CF, no matter the mutation.
Odesa has such a beautiful and bright personality, and she is always making us smile and laugh. She is currently in OT and PT for gross motor skills, and is going to Nature School once a week. She loves to sing and dance! Anything to do with music is the most fun to her. She is currently walking with the help of a walker, but we anticipate that she will ditch the walker very soon!
Thank you so much for taking your time to learn about this rare disease, and we hope that you will join us in walking and raising awareness to CURE this disease once and for all! #untilitsdone
After spending her first 11 months of life in the desert, our family opted to move to Idaho to be closer to Grammy and Grandpop.
The transition had a bumpy start with our first culture containing pseudomonas. But after a round of antibiotics, Odesa was able to heal up quickly. Odesa is now a year and a half and she is thriving! We haven’t had any hospitalizations, and attribute that to starting Orkambi at 1 year old. Orkambi is a modulator drug that has been FDA approved for children ages 1 and older. When she turns 2 she will be eligible for Tricafta, another very important modulator drug that has significantly increased the lifespan of patients with CF. As incredible of a feat this is, only patients with certain gene mutations are eligible for these life-saving medications. That is why we need to continue to fight and raise awareness so eventually we will find a cure for ALL patients with CF, no matter the mutation.
Odesa has such a beautiful and bright personality, and she is always making us smile and laugh. She is currently in OT and PT for gross motor skills, and is going to Nature School once a week. She loves to sing and dance! Anything to do with music is the most fun to her. She is currently walking with the help of a walker, but we anticipate that she will ditch the walker very soon!
Thank you so much for taking your time to learn about this rare disease, and we hope that you will join us in walking and raising awareness to CURE this disease once and for all! #untilitsdone
JAN
6
6
#1 BSU fan
Having fun at Nature School
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