Here is a lovely example of community pitching in and helping out a family in need. “In April 2019 we received the heart breaking news that our beautiful Maggie has Juvenile Tay Sachs disease. It’s a regressive genetic illness which is always fatal and results in gorgeous children progressively losing all of their skills and becoming increasingly unwell until they pass away in late childhood. While we were learning to live with her diagnosis, and choosing to make the most of the time we have with her, we then tested our other two children Billy and Alice.” We hear from devoted mother of three, Kelly McElligott.
“We received the devastating news, early this year, that our gorgeous Billy also has Juvenile Tay Sachs and will also begin to decline like we have seen with Maggie.
“Since Maggie’s diagnosis she has lost her ability to talk, to toilet independently, to eat and also now to walk. Maggie has become wheel chair dependent and has seizures every day.
“Billy is starting to have some difficulty with his speaking and is starting to trip over.
“Our youngest daughter Alice does not have Tay Sachs, however faces her own challenges growing up with older siblings who are gradually losing the skills they have developed. She will sadly lose them before they become adults.
“We have been completely overwhelmed at the support and love we have received from everybody in our lives while we have grappled with our grief. We are also full of gratitude for the beautiful children we have and every day we are given to hold them in our arms.
“Every single person we come across have offered to support us and a week ago came the time for us to ask for more help, even though it is an uncomfortable position to be in. We need to purchase a car to have modified to enable us to transport two children in wheelchairs.
“We cannot believe the response we’ve had. Words cannot describe the level of gratitude we feel. The support, love and incredible generosity of our family, friends and community is unbelievable! Our gofundme page has achieved its goal.
“Once again the biggest thank-you ever! Each and every one of you have made such a positive difference to our lives in such a short period of time and we will be forever grateful!
“Finally Rory and I want to thank everyone for taking the time to read our story and for always thinking of us! At times when our grief feels almost overwhelming it is the love of our family and friends that picks us up and keeps us going!”
Love Kelly, Rory, Maggie, Billy and Alice! X
Story: Jacqui Bennett. Photo supplied