Extremely rare condition leaves seven-year-old Grace in palliative care

Seven-year-old Grace is the only person in the state with this condition which leaves her body slowly and painfully locking into place.

Grace is a vibrant seven-year-old girl who loves school, reading and is a master at building Lego.

At only three months old, she was diagnosed with fibrodysplasia ossificans progressiva (FOP), an extremely rare genetic condition.

FOP causes muscles, tendons and ligaments to gradually turn into bone, forming an extra skeleton that slowly locks the body in place.

She is currently the only known person living with FOP in South Australia with only 900 people diagnosed world wide.

Leah Terry and her daughter Grace. Grace is in palliative care, although still going to school. Photo: Naomi Jellicoe

“It is incredibly painful to watch our daughter suffer,” her mother Leah Terry told The Advertiser.

“FOP has already taken so much from her, her ability to move freely, her comfort, and her childhood innocence in many ways.

“And yet, despite all of this, Grace faces each day with resilience, warmth and a quiet strength that inspires everyone around her. She has a very positive outlook on life.”

Grace entered palliative care at Women’s and Children’s Hospital when she was three years old.

“I didn’t know what to expect, I felt overwhelmed, emotional and unsure if we were ready for this step.” Ms Terry said.

HAS Foundation has provided Grace and her family a source of comfort and connection. Photo: Naomi Jellicoe

HAS Foundation has provided Grace and her family a source of comfort and connection during this time, including sending care packs throughout the year.

“Raising a child with rare and complex needs can often feel incredibly isolating and lonely but HAS recognises this deeply,” Ms Terry said.

The HAS Foundation SkyCity Mother’s Day Luncheon is the foundation’s annual fundraising event held in the lead up to Mother’s Day.

All funds raised go directly to supporting South Australian families through various programs, including providing care packages, and the HAS food program.

Originally published as Extremely rare condition leaves seven-year-old Grace in palliative care