Nov 1, 20205 minFamily Planning with a Genetic Mutation by BrookeThis blog is really quite specific to families in situations similar to ours, so I hope by sharing I can let some women know they are not...
Jun 28, 20202 minHypotonia - Joey's Story Our relationship with Hypotonia started as soon as Joey was born. He was diagnosed with mild hypotonia during his admission to the...
Jun 26, 20202 minHypotonia - Ariella's Journey I don’t remember the exact moment we were told Ariella had hypotonia, that whole first year of life was a blur of seizures and screaming...
Jun 25, 20202 minHypotonia and Standing - Lilly's story We grieved the different diagnoses, first deafness, next seizures, then hypotonia, and finally Tbc1d24 as the responsible gene which...
Jun 3, 20201 minTBC1D24 Foundation Announces new partnerships The TBC1D24 Foundation is excited to announce new partnerships with the Epilepsy Foundation of America's Epilepsy Health Learning System...
May 13, 20202 minMothers Day: The mother who lost her childBy Brooke, mum to Ariella Tomorrow is Mothers Day, well in Australia anyway. Mothers day has always been my favourite day, not only to...
Mar 27, 20203 minQ&A with a Respiratory Therapist Foundation co-founder and super mom, JoeyLynn, is also a pediatric respiratory therapist of 16 years. With current COVID 19 related...
Mar 16, 20202 minA day in the life by Andrea, Sammy's mamaI work full time as a second grade teacher. This week we are on spring break...
Mar 16, 20202 minA day in the life by Brooke, mum to AriellaThis weekend Ariella was meant to have two birthday parties...