6 Years Old | England
3-4
We got Lilliarna’s diagnosis just before her 4th birthday after joining a gene research programme in the UK
Living with INAD is extremely difficult. You do have your good days and bad but Lilliarna requires 24-hour care.
Lilliarna is a happy and content little girl who fights so hard every day. She has a great professional support team around her and attends a fantastic school that meets her needs.
Lilliarna loves school and enjoys her music therapy and hydrotherapy. She’s just one big softy and loves a good snuggle up with her family
Lilliarna’s on a blended diet via a feeding tube. She enjoys lots of yummy food like chocolate cake, roast dinners and McDonald’s.
Lilliarna has loved the programme Tipping Point. It’s part of her routine to watch when she comes home from a busy day at school.
Lilliarna loves any stories, in particular the ones you can do actions and sounds to.
We have definitely felt the meaning of life’s to short!
Every day is hard, but these children living with INAD are absolute warriors, they fight for everyday and everyday with them is a blessing and a joy. Never underestimate them!
Harley is Lilliarna’s big brother. His life has changed so much having to adapt to Lilliarna’s needs but he just goes with it. He’s an amazing big brother who is very protective of her. He makes her smile and Giggle and she just adores him.