Hi. My name is Molly Rose (9 years old)

This is our Molly Rose aged 9 from Bath, England. She was diagnosed in September 2019 after being part of a genome sequencing study. The geneticist said that she has it mild. She suffers no seizures. Her main challenges are learning disability, communication and fine motor skills. She is a happy little girl except for when she can’t get her own way.   She is able to communicate verbally at a basic level. Her best sentence to date is ‘I can’t do it mum help me do it’. She has slept 12 hours a night solid from 4 weeks old. She loves food and eats everything apart from olives.  She is toilet trained thorough still has accidents regularly.   She’s loved books since she was tiny.   Stickers. Water play. She is in top set for swimming in her resource base class at school! Loves Horse riding, the beach, holidaying. She can ride a bike with stabilisers on. She loves to run free, which terrifies us as she has zero sense of danger.   She’s a reluctant learner but knows her numbers and knows around 12 letters. She is starting to be able to put letters together to form simple 3 letter words. She would watch tv or iPad 24/7 if we let her.   She gets obsessed with tv programmes for months and we all have to adopt names from the programme!  She has a new puppy called Hopper, Molly is obsessed with him.   She brings us joy and frustration in equal measure.