As NDIS Plan Managers we’re lucky enough to meet and interact with extraordinary people on a daily basis whether they’re Participants or providers there’s always a great story to hear. Often those who have stories to tell give us the honour of sharing it with the world, one of whom is Kirsty Ah Matt, mother of Shanika Ah Matt-Lovett, a “happy, friendly, positive, confident, chilled young lady” from Adelaide who lives her life with Kabuki Syndrome. Shanika has had a year filled with achievements that we’re incredibly happy to have spoken with Kirsty about… Can you give us some insight into Shanika’s experience with Kabuki Syndrome and what it means for her everyday life? She was diagnosed about the age of 6 after being labelled with “Global Developmental Delay” basically from birth. I had mixed emotions when she was first diagnosed. It was a relief in one way to finally have a name for it, but then it was a slap in the face that this was real and wasn’t going away. She’s only mild. There are others much worse than her. Her main things are: Short in stature, speech, intellectual disability, hearing, her teeth, low muscle tone. Because of her … Continue reading Shanika’s Achievements – Volunteering with Kabuki Syndrome