Since a life-saving liver transplant in August 2015 it has not been a completely smooth recovery for three-year-old Elyarra Joly.
Elyarra had to be on intravenous for quite some time after her transplant, said her mother Elizabeth Judd.
“The bumps on her skin are getting better but there's still difficulty with eating, physiotherapy, gross motor and fine motor stuff,” Judd said.
Elyarra was born with Alagille syndrome, a rare genetic disorder that affects around one in every 100,000 live births.
Alagille syndrome causes abnormalities in a person's bile ducts, resulting in a build-up of the digestive fluid that scars the liver and prevents it from working properly to eliminate waste from the bloodstream.
Judd said her daughter's condition has improved since her liver transplant – she is less jaundiced and has more energy – but she has faced some additional complications since then.
Around six months ago Elyarra was diagnosed with Perthes disease, a rare childhood condition that affects the hip.
The condition occurs when the blood supply to the rounded head of the femur (thighbone) is temporarily disrupted (due to the liver transplant in Elyarra's case).
Without an adequate blood supply, the bone cells die in a process called avascular necrosis.
Because Elyarra is so young, it's possible, with proper support, for her femur to grow back into a more rounded shape that fits into the socket of her hip joint.
But if that does not happen naturally, she may need surgery.
Judd said they will meet with a specialist in Toronto in August to get an update on Elyarra's prognosis.
Elyarra also has a heart murmur that predates her liver transplant. While her heart murmur has not worsened since the transplant, it has also not improved, said Judd.
On Sunday, June 5, Judd will host a fundraising event at the Royal Canadian Lockerby Legion, located at 2200 Long Lake Road, to help cover ongoing medical costs for Elyarra.
Those costs include frequent trips to Toronto for her medical care, and some medical equipment not covered by insurance.
The family-friendly event will take place between 1 p.m. and 4:30 p.m., and will include a silent auction, toonie table, bake sale, card readings, face painting and live music.
Admission is $5 for adults, and free for children under the age of 10.
