It Takes a Village
The age old saying is that “It takes a village to raise a child.” In Fisher Bryden’s case, he is thriving because of the strength of his village. “When Fisher was born, he couldn’t move a muscle … not even his finger,” said Dianne Bryden. “He was in the NICU the first three weeks of his life, before we got the diagnosis of Prader-Willi Syndrome.”
We all know that getting the diagnosis of PWS can be devastating. It can feel like you are left alone and isolated to deal with the complexity and challenges of Prader-Willi Syndrome. “It took me 3 years after the diagnosis to come to terms with it and really become pro-active, “ responded Dianne. “The doctors painted the worst possible picture and I felt overwhelmed.”
In Dianne’s case, it was her family, her friends and her church that got her through it. “What has helped me the most is being around other people dealing with PWS. Going to the FPWR conference and meeting positive people dealing with the same issues, was life changing. Now I am ready to step out of my comfort zone and say … my child has Prader-Willi Syndrome and I need your help to find a cure.”
… and is Dianne ever ready! In the last year, Dianne has become President of Tennessee’s first PWS association www.pws-tn.org and is already making a difference. To get started, she is hosting a One SMALL Step walkathon in Hixson, Tennessee on April 30th to raise money for research. “We are planning to make it a real community event as we have had such amazing support from our family, friends and church. We couldn’t have got though it without them”. But this is just the start. Dianne is also assisting Angel Sims who is running Tennessee’s annual car wash in Chattanooga on May 14th and hosting a family day at Chattanooga Zoo on June 25th which is free for all PWS families.
Jeff and Dianne Bryden live in Soddy Daisy, Tennessee. Dianne works full time as a court reporter and Jeff is a detective with the city of Chattanooga Police Department. Fisher is now 4 years old as of Feb. 7th and lovesplaying with his older sister Ellie (7 y.o). He is running, has no food seeking behaviours, is slim, loves being around people and attends an amazing school with a 50/50 mix of children with special needs. “Fisher understands everything going on around him and is beginning to seek out his peers to interact and communicate. I am so proud to see how far he has come,” mentioned Dianne.
As President of the Tennessee PWS Association, Dianne is looking to build upon that family feeling. “We will continue to have our business meetings, but I am working on organizing local focus groups across the state and would encourage everyone to do the same. It’s the best way to have families dealing with PWS get together, share stories and support each other,” stated Dianne.
It really does take a village … and we are lucky to have Dianne as part of our global PWS village.
You can reach Dianne to discuss membership or events in Tennessee at firstname.lastname@example.org