This week, 52 Lives wants to help a little boy called Logan, from a small town in New South Wales, Australia called Glen Innes.
Before his 1st birthday, Logan was diagnosed with Phelan McDermid Syndrome. It’s a rare Genetic Disorder that affects only 1300 people worldwide and causes a whole host of major medical issues, including severely low muscle tone, breathing issues, gastro difficulties, low functioning kidneys, and a sensory processing disorder, to name just a few.
Logan’s day to day life involves full-time care. He’s on a puree thickened diet, is spoon fed and can drink only from a bottle. He has had to be catheterised to help maintain the health of his worsening kidneys.
Living in a small country town means Logan’s mum and dad have to travel a lot with Logan to ensure he is able to get the medical treatment he needs. Just to see a Pediatrician requires a 200km round trip. And for some tests he has to travel between 400km and 900km. Logan’s mum was still working as an early intervention teacher when Logan was younger. She used to use all her sick leave and holiday days to care for him and take him to his appointments. Logan has a little sister, Matilda, who is now 1, and they made the decision that his mum would stop working to care for the two children full time.
Living on one wage with 2 children, one who has severe special needs, has a huge impact on the family financially. They have had some help with various pieces of equipment and try to fundraise, but there are a lot of things Logan still needs.
We would love to help make Logan’s life a bit easier and do something kind for his family.