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‘They had already labelled her, never to do anything, never to be able to walk, talk or do anything. But I see the determination in her, I will not let the disability make her be disabled.’
Chris’s daughter, Rachel, was diagnosed at age three with a rare genetic disorder. After battling against doctors who didn’t believe her and even accused her of mistreating her daughter, Chris developed a fierce determination to trust her own instinct when it came to knowing what was best for Rachel. Hear how Rachel’s parents continue to experience life and joy through Rachel’s eyes.
Key takeaways from this episode
A rare diagnosis did not define Rachel’s future. Rachel was diagnosed at age three with the rare genetic condition Wolf–Hirschhorn Syndrome, with doctors predicting severe lifelong limitations and a short life expectancy.
A mother’s instinct challenged medical expectations. Chris trusted her instincts when doctors dismissed her concerns and even accused her of being an unfit parent—her persistence eventually led to an accurate diagnosis.
Determination became the turning point. When Rachel took her first steps around age three, Chris and Noel decided they would treat her as a child with ability, not disability.
Ability Chocolates created purpose and visibility. The family launched a small chocolate business so Rachel could have meaningful work, responsibility, and public recognition in the community.
Purpose builds confidence and dignity. Rachel thrives through labelling, packaging, and delivering chocolates, gaining confidence, structure, and a sense of belonging.
Community acceptance transformed daily life. Being recognised and welcomed by local businesses and neighbours has helped Rachel feel seen, valued, and included.
Joy comes through simple pleasures. Rachel’s love for singing, dancing with friends, the Wiggles, and everyday activities highlights the beauty of a joyful, non-judgemental life.
Parents still carry the future in prayer. Chris remains aware that Rachel may one day need supported independent living but trusts that god will provide care through family and community.
Faith sustains the journey. Daily prayer, church involvement, and Rachel’s simple childlike faith in Jesus bring strength, hope, and peace to the whole family.
Ability is greater than limitation. Rachel’s life shows that when people look beyond disability and focus on potential, extraordinary dignity, purpose, and joy can emerge.
Episode transcript
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Related booklet
How do you parent with purpose? Order our booklet Parenting with Purpose for insight into managing the balance between life and loving and protecting your children the best way possible.