Hi, we are fundraising to support the family of Hallie who was born terminally ill.

No parents should have to say goodbye to a baby, and they absolutely shouldn't have to miss out on a second spent with that baby because of financial worries.

My cousin's family is facing an unimaginable challenge, and we are reaching out for support. Our beloved Hallie was born with a rare and terminal condition called Zellweger Syndrome, and sadly no baby diagnosed with it has survived to their first birthday. This condition is so rare that there are only a few cases like hers in the world, so research is limited, and sadly, there’s no cure. It affects Hallie’s ability to breathe, and causes her to have seizures. She has very low muscle tone, impaired liver function, limited hearing and has to be fed by tube. Despite all this, Hallie is a warrior, and rarely cries and complains. She shares her love with all of us who care for her.

The severity of Hallie’s condition means that she could pass at any moment. Both of Hallie’s parents, Josie and Ryan, are always on high alert 24 hours to check her for seizures, and ensure that she is breathing. As you can imagine, this has been an incredibly difficult and emotional time for both of them, and they are trying to cherish every moment they have with their sweet daughter. As both are carriers of the Zellweger gene, the chances of future children also being affected is 1 in 4, making it even more important that they are able to enjoy as much time as parents with Hallie as possible.

Because of the constant care and medical attention Hallie needs, neither Josie or Ryan are able to work. They are doing everything they can to stay strong for their little girl, but they need your help to continue to be able to make the most of the time they have together. Ryan is an HGV driver, which would be immensely dangerous, whilst carrying the physical and emotional exhaustion of this sad situation. As such, he has had to take this time off unpaid from his employer. His wage was planned to support their new family, and also pay the rent for Josie’s newly opened business, that was launched just before they discovered that they were expecting, and was paid for using the money they had saved for their first house deposit. Unfortunately the UK benefits system is hugely inadequate for this tragic set of circumstances, and has a gaping hole, lacking adequate support for parents who have such little time with their newborn child. As such, we are reaching out to our friends, family and community to donate as little, or as much as you can to help lighten their financial burden, and surprise them with the ability to make as many financially worry-free memories together as time will allow.

Every donation, no matter how small, will make a world of difference in their lives.

Whether you are in a position to donate or not, thank you for reading this. Please keep them in your thoughts and prayers, and if you are able to contribute, please know that you are providing a lifeline during the hardest time of their lives, and helping to ensure that when the time comes to say goodbye, they can plan the funeral that Hallie deserves, and not have to face a future of immense debt.

Thank you from the bottom of our hearts.