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Help us on our mission of finding a cure for INAD/PLAN:

Lilliarna L

6 Years Old | England

About This Superstar

Age of Diagnosis

Finding A Diagnosis:
We got Lilliarna’s diagnosis just before her 4th birthday after joining a gene research programme in the UK

How INAD Has Impacted Their Life
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.

Favorite Activities
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

Favorite Foods
Lilliarna’s on a blended diet via a feeding tube. She enjoys lots of yummy food like chocolate cake, roast dinners and McDonald’s.

Favorite Television/Movie Character
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.

Favorite Books
Lilliarna loves any stories, in particular the ones you can do actions and sounds to.

Parent’s Favorite Motto or Expression
We have definitely felt the meaning of life’s to short!

What They Would Like the World to Know About Their Experience Living with INAD
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!

Special Fun Facts
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.

To share your child’s story with us fill out our Child Stories Form