In the past 3 years, Ollie has spent most of his life in and out of the Royal Children’s Hospital in Melbourne. He battles constant chest infections and now has Bronchiectasis - irreversible lung damage - much earlier than we expected. This news devastated us.
On top of all the respiratory issues, Ollie has always struggled with weight gain, and when he is unwell, his weight drops off significantly. He is so unwell that his medical team has applied for compassionate access.
As we wait for Trikafta to go to the PBAC meeting, we’re in the hospital again. This is his 11th hospital admission.
The constant hospital admissions, daily medication, and strict Physio routine are extremely hard on the whole family. There are times when our three older children have to miss out on events, holidays, and family time.
We are desperate for Trikafta to be approved so Ollie can thrive as a healthy 3-year-old boy and give us back our family time without the constant worry that Ollie will become unwell. These treatments bring us hope, but we can’t bear to think what will happen if he does not access Trikafta soon."
Ollie’s story is just one of the approximately 300 families with children aged 2-5 who have at least one F508del mutation and are waiting for Trikafta. With the Pharmaceutical Benefits Advisory Committee (PBAC) meeting being held later this week, we hope a positive outcome will be reached so these young children have the chance to live the lives they deserve.
Ollie - aged 3 1/2 being weighed at clinic.
CFCC will provide an update when the outcome from this meeting is released on April 26.
UPDATE - ANNOUNCEMENT 26TH APRIL 2024.