Born with a rare brain condition- William has only 50% chance making his 1st birthday

Hayley & Mat have had a tough journey into parenthood. After enduring an ectopic, miscarriages & fertility struggles their first son was born with VEO Chrons. Their second son was born early & tragically passed away at just 8 days old. Desperate to complete their family they began fertility again & after 6 months, fell pregnant. It was a very high risk pregnancy. Hayley had to spend a month in hospital on bed rest & had weekly scans for most of her pregnancy. Williams condition was visible from 20weeks but was never noticed.

William was born & they were so relieved to have their healthy baby in their arms. The excitement was short lived as it became apparent that he was a very sick little boy.

He has a very rare brain condition resulting in a 50% chance of surviving to age 1. If he does survive, he will live with severe disabilities, sezuires, muscle pain, will never be able to walk or talk & is unlikely to eat food without a tube.

At 6 months old he is developmentally still a newborn. He cries 90% of the time he is awake, due to his severe neuro irritability, leaving Hayley struggling to return to work as she is managing medications, appointments as well as being his advocate & fighting for him within a very broken health system. I'm Hayley’s older sister, and I’m trying to raise the funds to give this family the freedom to make memories & enjoy their little boy, and when the time comes, to allow them to grieve without financial worries of returning to work and funeral costs.