When Oliver was just a couple of weeks old, we received a phone call that his newborn screening test came back abnormal. After multiple sweat tests and blood tests, we discovered Oliver has two CF traits. He was originally diagnosed with CFTR - Related Metabolic Syndrome (CRMS). Unfortunately, in 2019 Oliver's sweat tests results went up significantly and his diagnosis was changed to CF.
2022 Update
Oliver continues to do PT daily in order to avoid mucus build up. Now that he is 6 he will be starting Trikafta in the next couple of weeks as preventative measure. Oliver's team is super excited for him to start this since it is 3x as effective as his prevoius medication.
Please support us!
Your money goes to funding research that allows medications to be used on different traits (like Oliver's!) We are incredibly grateful for our insurance that makes this $300,000 a year medication affordable, but that is not the case for everyone. Your money also helps other families who cannot afford these life saving medications obtain them. Your gift is 100-percent tax deductible.
Since Oliver turned 6 this year we have a modest goal of $600 and are hoping to increase our goal to match his age every year.
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