Saul was diagnosed with cystic fibrosis as a newborn and had an ileostomy the next day.
One of his mutations is very rare and so when he was born there was nothing close to Trikafta on the horizon that he would be eligible for.
Right when Saul turned six he was diagnosed with Type 1 diabetes as well and while we was in the hospital he started taking Trikafta.
Trikafta is a miracle and has been so helpful in keeping Saul healthy, but it’s not a cure and he still takes an incredible amount of medications to keep him alive and healthy.
Additionally, there is another child we know who also has Saul’s rare mutation- as well as another rare mutation that render him ineligible for Trikafta.
So we walk and raise money for these life saving medicines to be available for everyone and eventually for a cure
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.