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Located: New Zealand

Symptoms: ADHD, Autism, Epilepsy, Macrocephaly, Mild intellectual disability, Overgrowth


Our Flynn was born three days before his due date, with normal labor and birth. The first thing I noticed was he has large skin tags attached to either side of his face near his ears. Apart from this he seemed like any other new born. The day he had his six-week vaccinations he had his first seizure, which was put down to a slight fever. He subsequently had more seizures, all put down to febrile.

Flynn was a loud, rambunctious toddler who was in a world of his own, and was constantly seeking touch (tactile) and smell and taste. He was also very hard to read as he didn’t show any emotion. When Flynn was five, he was diagnosed with autism and at age six he was diagnosed with ADHD. Flynn started having absence seizures at around seven years of age and he was sent for an EEG, which confirmed he had epilepsy.

Flynn was a terrible sleeper and only started sleeping through at around 12 years of age. He still likes to get up during the night and raid the pantry and fridge.

From early on we knew Flynn was special and there was something else the medical professionals were missing. After many doctors’ visits, paediatricians, speech therapists, occupational therapists, and physiotherapist visits, we were finally referred to a geneticist. Our geneticist noted Flynn’s size along with food-seeking behaviours and broadly spaced eyes, large teeth, and tapered fingers and started testing for other overgrowth syndromes.

While waiting for these tests, I typed overgrowth into Facebook and up came the TBRS page. . . . WOW, I knew then that this is where Flynn belonged. After contacting the wonderful members, I emailed Dr. Kate Tatton-Brown and our geneticist, who organised for Flynn to join the overgrowth study. And the rest is history.

Flynn was really hard work when he was young. His size and strength and behaviours were always a challenge as was the public’s reaction to his behaviours. Flynn is almost 17 now and he is over 6 feet and is a solid build. He has a huge love for animals, especially cats. He also loves to talk, nonstop sometimes, and he loves to research things that people wouldn’t normally think about, as he is extremely inquisitive and is always asking questions.

Flynn still has food issues. He loves sugary food and drink, which we have to monitor closely, and he refuses to eat root vegetables like potato of any type but loves chillies and cucumbers. Flynn also has a very high pain tolerance and has never complained of pain. This has been hard as he often had ear infections when he was younger that we didn’t notice until he was very sick. He also had to be monitored in the shower and bath for many years as he doesn’t feel hot or cold.

Flynn is currently academically around age 7–9 and socially the same. He loves playing with younger children.

Flynn still loves to touch soft things and is a giant teddy bear who doesn’t understand his own strength. We need to remind him to hug gently so he doesn’t squeeze our insides out. We love our young man and get many laughs out of him, and he always comes out with the greatest puns and sayings.


Written by his mom Charlotte.