Right now, more than 400,000 children in Australia are living with a rare disease. Among them is three-year-old Abigail, a courageous little girl whose strength defies her tiny frame.

Throughout their journey with Sydney Children’s Hospitals Network (SCHN), Abigail’s family have felt the impact that community support can have. From specialised care and innovative treatments, they’ve experienced firsthand how Sydney Children’s Hospitals Foundation (SCHF) supporters help deliver extraordinary care when it’s needed most.  Now, they are excited to see new research projects with the power to change the future for kids like Abigail.

Born during the 2021 COVID lockdowns, Abigail entered the world via an emergency c-section once doctors noticed she stopped growing. She spent her first two weeks in the Neonatal Intensive Care Unit (NICU), before finally making it home just in time for Christmas.

Her condition worsened to the point where she wasn't responding well and had to be urgently transported by the Newborn and Paediatric Emergency Transport Service (NETS) to the Paediatric Intensive Care Unit at Sydney Children's Hospital, Randwick.

There, an MRI scan uncovered that Abigail’s pituitary gland was smaller than usual, leading to a diagnosis of hypopituitarism - a rare, life-long condition where the body doesn’t produce enough of the critical hormones for growth, metabolism and overall health. 

Today, with medication, Abigail is a cheeky preschooler full of curiosity, embracing life with a spark that reflects just how far she’s come.

‘’Our Abigail is thriving, but she will need medication for the rest of her life to help control her metabolism, blood pressure and growth. While her condition is rare but stable, some families aren’t so lucky.’’

Like 95% of children with a rare disease, there is currently no cure for Abigail. But there is hope - through gene therapy and groundbreaking research. 

Abigail’s proud parents, Adrienne and Aaron, say it’s incredible to see research happening with the power to change the lives of children with no cure or traditional treatment.

Thanks to generous gift in Will supporters funding initiatives like the Kids Advanced Therapeutics Program at the Sydney Children’s Hospitals Network, the future is changing for children like Abigail.

If you’d like to learn more about how you can leave a gift in your Will, we’d love to chat. Please fill out the form below, call our Planned Giving Team on 1800 770 122 or email us at plannedgiving@schf.org.au.