Hi, my name is Caitlin, and I’m writing this as Callie’s mum.

Callie is our beautiful little girl who is now 3 years old. In November 2023, just after celebrating her 1st birthday, our world was turned upside down when Callie suddenly suffered a cardiac arrest.

She was shocked and worked on multiple times. Doctors worked on her for hours to bring her back. When she was finally stabilised in ICU, we were told the words no parent should ever hear—that it wasn’t looking good and we should prepare for the worst. First it was 24 hours, then 48 hours… but Callie kept fighting. She stayed in ICU for weeks, defying every expectation placed on her.

Because of the time it took to restart her heart, Callie’s brain was starved of oxygen. We were told she would be brain dead. But we never gave up hope. We prayed constantly—especially to Padre Pio—and we held onto faith in our little girl.

Slowly, miracles began to happen. A smile. Then rolling over. Sitting up. Callie had to relearn everything that had been taken from her, and every tiny step felt like a huge milestone. She showed us just how strong she is.

After weeks in ICU, one doctor requested genetic testing. We were moved to a ward where Callie began physical and neurological therapy. On the 20th of December 2023, we were called into a room filled with medical professionals—some even on Zoom—and told Callie had a rare genetic condition called PPA2. It was then we were told that due to Callie having Norovirus prior this is what led to her arrest.

We had more questions than answers. No clear roadmap. Just heartbreak, fear, and uncertainty about what the future might hold.

Callie was later moved to the heart ward in Clark Clinic at the Royal Belfast Hospital for Sick Children. The care she has received there has been nothing short of incredible. The nurses and staff and Children’s heartbeat charity have become a huge part of our lives, and we will never be able to thank them enough for all their continuous hard work and care.

In early 2024, Callie had a loop recorder implanted, but sadly it became infected and worked its way out of her body. In April 2024, she travelled to Dublin to undergo surgery for an ICD (implantable cardioverter defibrillator)—a device that was put in as a ‘back up’ if she were to go into cardiac arrest again. It’s not a ‘cure’.

if Callie hadn’t of made it we were told she would’ve been put down as SIDS.

PPA2 is an extremely rare genetic condition that can cause sudden, life-threatening cardiac events in children. Because it is so rare, research is limited,there is no cure and families like ours are left without answers or clear treatment pathways.

There is ongoing research in Utrecht, Netherlands, dedicated to understanding PPA2—why it causes sudden cardiac arrest, how it progresses, and how children like Callie can be better protected in the future.

We are fundraising to directly support this vital research and the Children’s heartbeat trust charity whom go above and beyond.

Every donation will go toward:

• Advancing scientific research into PPA2

• Helping researchers understand how to prevent sudden cardiac arrest

• Supporting the development of future treatments

• Giving families hope where there currently is very little

childrens heartbeat trust will help with:

•supporting heart family family’s

•counselling support

•family support events

•in hospital and outside support

•emotional and financial support with family’s having to travel to Dublin for surgerys

PPA2 research doesn’t just matter for Callie—it matters for every child and family affected by PPA2 now and in the future.

Children’s Heart Beat matters to help all heart family’s through a devastating time and continued support.

From Our Family

Callie is living proof that miracles happen. She has already defied the odds, and she continues to show us what true strength looks like every single day.

By supporting these fundraisers, you are helping to turn fear into hope, and unanswered questions into life-saving knowledge. And continued support from the children’s heartbeat trust also.

Thank you from the bottom of our hearts for reading Callie’s story, for donating if you can, and for sharing this page to help us reach as many people as possible.

thank you,

Caitlin