Original Story - From Jameson's Parents (Jameson is my cousin's grandson.)
We never would have dreamed that at one week old we would get a call from our amazing pediatrician trying to gently break the news to us. She asked if we could get on the call together, which is seldom a good sign. We will never forget her saying to us, "I am so sorry to tell you this over the phone." Our world stopped while waiting for what was to come next. Our brand new baby had tested positive for Cystic Fibrosis on his neonatal profile testing.
From that first appointment on we have been overwhelmed by the support of the UK Clinic and the CF Foundation. They have been there from day one to get his enzymes, vitamins and formula expenses paid to help cover any financial burden. They have connected us with helpful and up to date treatment options, linked us with other parents of CF patients, and they regularly reach out to see what we need. It has been amazing to have the support, understanding, and knowledge from people in our exact same situation.
What Jameson, and so many others need, is advancements in medical research. That is where you can help. Your support can help find a cure for Cystic Fibrosis.
We appreciate your love, prayers, and support.
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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.