Here are some of our kids who have been living with Jeune Syndrome

Paige
Paige (pictured second from left) was born in June 2005 and was diagnosed with Jeune Syndrome approximately a week later. Initially, we were told to expect the worst however further investigations revealed that the future wasn’t so bleak for Paige as she was on the mild to moderate end of the spectrum. So far she has done extremely well and has not been dependant on ventilator support. She has been hospitalised once overnight for observation following a bout of croup but has not required any further hospital stays.

Paige is now up and around and growing very well. She is average height and weight and her rapid breathing has now started to slow. She loves The Wiggles, Dora the Explorer and Bear in the Big Blue House and adores her older brother Lochlann and younger sister Ellie (pictured above with Paige and her cousins Hudson and Kelsey).

We have great hopes for Paige and every day she not only amazes us but also the specialists who are monitoring her progress. “Our little miracle” (as my family refers to her) is now almost 2 and is showing no signs of slowing down.

Jack & Hamish (twin boys!)

Jack Jack is an easy going, happy toddler. He likes to play with his brother Hamish, but is also quiet happy to sit and play by himself. He loves to build with Lego and play frequently in the wardrobe, pulling the clothes from their hangers after mummy has ironed them! Jack is at the lower end of the height and weight scale, but meeting all other milestones. He has kidney disease requiring dialysis, but is very good with taking all his medication.

Hamish Hamish is a typical toddler, intuitive and inquisitive. He always tells tales on his brother whenever Jack is doing something wrong, however misses him whenever they are apart. He loves to draw and play with his cars. He is above average height however on the lower end of the weight scale and meeting all other milestones especially talking (constantly).