Compassionate Use Program (CUP): A Mother’s Post

Patient Journey
A young life fighting adenovirus infection that could not be controlled despite every effort with existing treatments

A mother whose daughter regained her strength after treatment with brincidofovir recently shared a message of gratitude on social media.
We are deeply grateful to the mother for allowing us to share this moving message on our corporate website.
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A day we will never forget.

Today was one of those days where you look around and think… how on earth did we get here?
Today, we had the incredible privilege of meeting the people behind the medication that has given our Phoebe such a fighting chance. The very people who helped make the impossible feel possible when we were desperately searching for hope.
To go from some of the darkest days of our lives, watching our little girl fight for her life, to standing there today with Phoebe by our side, happy, cheeky and full of life, is something I don’t think we’ll ever quite find the words for.
But today wasn’t just about Phoebe. It was about Heidi too.
Our beautiful Heidi, who has had to grow up a little quicker than we ever wanted her to. Who has shared her mummy and daddy with hospital wards, endless appointments, worry and uncertainty. Who has missed out on precious family time and had her little world turned upside down, all whilst being the most incredible big sister.
Because whilst Phoebe has been fighting her battle, Heidi has been living it alongside us. And everything we have fought for has always been for BOTH our girls. For Phoebe to have a future, and for Heidi to have her little sister by her side as they grow up.
But somehow, our fight has become bigger than our own family. Our journey has already helped save the life of another little boy battling the very same thing as Phoebe.
And now we’re helping fight to get this life-saving medication approved, so that other families don’t have to fight the way we did.
No parent should have to beg for the chance to save their child’s life.
We’ve even been invited to share our journey with the company’s shareholders next March. Something we could never have imagined when all we wanted was to bring our little girl home.
Today was about hope, gratitude and the extraordinary people who helped change our story. But it’s also about the children still fighting and the lives that could be saved.
And through it all, we will never forget who we started this fight for.
Our two beautiful girls. One who fought to survive, and one who has been so incredibly brave through it all.
Our Phoebe and our Heidi. Our whole world.
We started this journey simply wanting to bring our little girl home. Never in a million years did we imagine we might get the chance to help change things for other families too.
One little girl’s fight. Another little boy’s life saved. And hopefully many, many more to come.
What a journey. And we’re not finished yet.

A day we will never forget.

Today was one of those days where you look around and think… how on earth did we get here?
Today, we had the incredible privilege of meeting the people chance behind the medication that has given our Phoebe such a fighting impossible. The very people who helped make the feel possible when we were desperately searching for hope.
The very people who helped make the impossible feel possible when we were desperately searching for hope.
To go from some of the darkest days of our lives, watching our little girl fight for her life, to standing there today with Phoebe by our side, happy, cheeky and full of life, is something I don't think we'll ever quite find the words for.
But today wasn't just about Phoebe. It was about Heidi too.
Our beautiful Heidi, who has had to grow up a little quicker than we ever wanted her to. Who has shared her mummy and daddy with hospital wards, endless appointments, worry and uncertainty. Who has missed out on precious family time and had her little world turned upside down, all whilst being the most incredible big sister.
Because Phoebe has been fighting her battle, Heidi has been living it alongside us. And everything we have fought for has always been for BOTH our girls. For Phoebe to have a future, and for Heidi to have her little sister by her side as they grow up.
But somehow, our fight has become bigger than our own family. Our journey has already helped save the life of another little boy battling the very same thing as Phoebe.
And now we're helping fight to get this life-saving medication approved, so that other families don't have to fight the way we did.
No parent should have to beg for the chance to save their child's life.
We've even been invited to share our journey with the company's shareholders next March. Something we could never have imagined when all we wanted was to bring our little girl home.
Today was about hope, gratitude and the extraordinary people who helped change our story. But it's also about the children still fighting and the lives that could be saved.
And through it all, we will never forget who we started this fight for.
Our two beautiful girls. One who fought to survive, and one who has been so incredibly brave through it all.
Our Phoebe and our Heidi. Our whole world.
We started this journey simply wanting to bring our little girl home. Never in a million years did we imagine we might get the chance to help change things for other families too.
One little girl's fight. Another little boy's life saved. And hopefully many, many more to come.
What a journey. And we're not finished yet.

Posted by: Jenai Wyatt-pike

Original post: LinkedIn
https://www.linkedin.com/posts/jenai-wyatt-pike-b6b062144_a-day-we-will-never-forget-today-activity-7518039772251013120-lQxL

Important Notice
Brincidofovir is an investigational drug under development and has not been approved in any country. Its efficacy and safety have not yet been established. The personal experiences and comments presented on this page do not constitute medical assessments or clinical trial results and should not be taken as evidence of the efficacy or safety of brincidofovir. Use of an investigational drug is permitted only through clinical trial procedures conducted at an authorized medical institution, except when the drug is provided under a Compassionate Use Program (CUP). Participation in a clinical trial is voluntary, and eligibility and conditions vary by trial.