Billy’s Story
This is the story of a remarkable little boy named Billy.
Billy's journey began long before he was born. After the loss of Billy's older brother due to a pregnancy complication resulting in a premature birth, Billy's mother Hayley endured another high-risk pregnancy that required her to spend a month on bed rest with weekly scans. At 19 weeks, it was clear that something was not right with Billy's brain however this was missed by all of the medical professionals involved in Hayleys care so it wasn’t until Billy was born prematurely at 34 weeks that a diagnosis was made. At just six days old,
Billy was diagnosed with Microcephaly and Semi-lobar Holoprosencephaly (HPE), a severe brain malformation it was also discovered that he was missing a part of his brain called the corpus callosum. His parents were devastated to learn that he had only a 50% chance of surviving to his first birthday.
After an incredibly challenging start, Billy has defied the odds and is now 19 months old, but his battle is far from over. He faces lifelong severe disabilities and is currently cognitively at the level of a 4-month-old. Billy
cannot talk, walk, crawl, or even bring his hand to his mouth. He can not eat and drink without aspirating and has been fed through a tube since he was six months old. His early months were filled with constant crying due to severe neuro irritability, making every day a challenge for him and his family.
Hayley tirelessly juggles multiple medications and fights for the care Billy needs in a broken healthcare system.
Living in a region with limited public support, Billy cannot access regular therapies such as speech and language therapy, which are crucial for his development and ability to eat and drink. Despite these challenges, Billy has shown remarkable improvements when he attended two intensive therapies that are not available in New Zealand and take place on the Gold Coast in Australia. Previously there was funding available to help with the costs involved in getting him to therapy however due to recent changes within the disability sector, that is no longer an option. These therapies not only boosted his mood but also contributed significantly to his development.
Unfortunately, due to the funding changes, Billy can no longer attend these therapies unless they are privately funded. The public system offers him only one hour of therapy every fortnight, which is far from sufficient for his quality of life or for his long term development.
We are fundraising to ensure Billy can receive the regular, intensive therapy he desperately needs. Any donation can make a world of difference in Billy’s life, helping him achieve milestones we once thought impossible and significantly improving his quality of life.
The donations we receive through the generosity of the public will not only give him the chance to walk, talk, and eat but will also provide hope and relief to his dedicated family.
Thank you for taking the time to read Billy’s story and for any support you can offer.
Newspaper Article published 31/08/2024
Become Part of Billy's Journey
Contact us today to learn how you can contribute or get involved in our fundraising efforts for Billy.