I met Trudy through my autism support group when Hayley was very young.

Hayley was later diagnosed with a rare genetic condition called Pseudohypoparathyroidism type 1a – Albright’s Hereditary Osteodystrophy.

Over the past year, Hayley has been slowly regressing in her cognitive functioning. After undergoing a CT and MRI, their world was shattered when the scans revealed extensive and widespread calcification throughout her brain.

Hayley is only 19 years old, yet she already has calcification in approximately 60% of her brain—something her specialists say they’ve never seen, even in patients in their 90s.

In just the last three months, Hayley’s decline has been devastating. She is experiencing severe memory loss, loss of speech, and seizures, with symptoms resembling a heartbreaking combination of Parkinson’s and dementia.

Hayley is frequently seeing specialists, which are difficult to access due to the rarity of her condition. She also undergoes numerous tests to monitor her health, all of which have come at a significant cost, as waiting within the public system is not an option. Recently, they have found a specialist interstate who has offered a glimmer of hope in slowing the progression of her condition, though this too comes with considerable expense.

Trudy has devoted her life to being Hayley’s fiercest advocate. As a single mum, she has raised an incredible young woman who gives so much back through her community volunteering and embraces life with so much love and joy.

I feel heartbroken for both Trudy and Hayley and want to help them create some precious memories together, knowing their time is limited. As Hayley continues to regress, her medical needs will only increase, along with the costs of her ongoing care.

Any contribution, no matter the size, would mean so much. Trudy is a proud woman who would never ask for help herself, but her friends want to do this for her. She deserves the chance to share joy and make lasting memories with her beautiful girl.