Help give Isla the life she deserves before time runs out

Hello, my name is Amanda, and I am reaching out to you with a heavy heart to help the Hunter family raise vital funds for their precious little girl, Isla. Time is slipping away, and we want to ensure she experiences the love and joy she deserves in the time that remains.

 Isla is a radiant little girl whose smile and love light up every room. With her big brown eyes and curly hair, she captures hearts effortlessly. Her adoration for her brothers and her need for cuddles from loved ones are testament to the joy she brings to everyone around her.

Tragically, Isla's childhood has been shattered by the devastating diagnosis of Infantile Batten Disease—a terminal neurodegenerative condition that ravages her brain cells and nervous system. This cruel disease is aggressive and unforgiving, and it has robbed her of her abilities, taking away her voice, her mobility, her vision, and her fine motor skills. She now requires complete care and attention as we face the heartbreaking reality of palliative care. The time we have with her is painfully short.

 When Isla was born, she was the icing on the cake, the perfectly perfect final piece to a beautiful family story. Her tiny hands grasped tightly, full of promise and dreams. But then came Batten disease, a cruel thief that stole away their hopes and visions for her life. The dreams of walking her down the aisle, of attending her ballet concerts—where she would twirl and wiggle with joy—have been shattered. Isla, who was meant to start school this year, now faces a different reality as this monstrous disease strips away every milestone they imagined.

 Isla will always be Daddy’s little girl, the sweet child whose first and last words echoed with love. Now, those dreams are reduced to a desperate wish for her to simply exist and to see her smile. I’ve witnessed her family, exhausted yet unwavering, fight tirelessly for Isla’s comfort and care. They strive not only for her medical needs but also for her dignity—to ensure she is seen, acknowledged, and valued. They want her disease to be recognized as significant, not overshadowed by others. Every moment is a battle, and every smile from Isla is a hard-won victory. This family deserves our support, for they embody resilience in the face of unimaginable heartache.

 As a mother, it tears me apart to witness my daughter and son-in-law face a battle that no parent should ever have to endure. I’ve seen Nikita selflessly sacrifice her career, transforming into an extraordinary mother and caregiver. She’s become a pharmacist, a medical expert, a physiotherapist, a nurse, an advocate, and a teacher—all while preparing their boys for the heartbreak that lies ahead. Meanwhile, Harley leaves for work each day, pouring every ounce of effort into providing for his family, even as he grapples with the reality of their limited time together. This should be a time filled with joyful memories, laughter, and adventures, but instead, they’re left to navigate the unthinkable, I’ve personally watched them experience set back after set back, no funding and no support, from the government, the NDIS, charities, medical staff, there is no funding at all for rare diseases and their families, they are simply not seen, not worthy for recognition because the numbers aren’t there, and not enough people can relate to this kind of heart ache! As a mother all I want is to see them create as many beautiful moments as possible before the hourglass runs out.

 The Hunter family can no longer travel and fly with Isla due to her weight and head control, I know they dream of finding a caravan that can accommodate Isla's needs, allowing them to create a beautiful send-off for her.

If only I could alleviate their financial struggles and make this dream a reality! My heart aches for them, and I wish I could do more to ease their burden.

 If you can help me support this incredible family during this unimaginable time, it would mean the world to me—and to them. Together, we can help ensure that Isla feels the love and joy she deserves in her remaining days. Thank you for considering this heartfelt plea.