Mum’s Heartache After Her Five-Year-Old Daughter Was Diagnosed With Rare Genetic Disease

A mum is doing everything to keep her five-year-old daughter comfortable as she fights a terminal genetic disease that will rob her of her voice, sight, hearing and ability to move.

Mum-of-two Bec Lawford, from Melbourne, told Nine News her world crumbled upon learning that her daughter, Indie Fitzgerald will likely not live much longer after being struck with a terminal genetic disease that will take away her ability to speak, hear, see and move.

Indie was diagnosed with infantile neuroaxonal dystrophy (INAD) when she was just three years old, a condition that affects the nervous system, caused by a build-up of toxic stubstances which affect part of the nerve cell, preventing messages travelling from the brain to other parts of the body.

It is believed that the condition has no cure or treatment, and since it is so rare, the number of incidences are unknown.

Now, the heartbroken mother is just doing everything to make Indie as comfortable as possible while her body is gradually failing as the condition has started to rob Indie of her senses and abilities.

Ms Lawford said Indie can no longer hold her head up, stand or sit by herself, or move her legs. She said that her daughter requires botox in her legs twice a week to prevent them from locking up.

She also said that the condition has left Indie very susceptible to illnesses. “Indie had 16 hospital admissions with chest infections and tonsillitis last year, so we spent about three months of the year in hospital. It’s really tough,” she said.

Despite this, Ms Lawford was just glad that she heard her daughter say ‘Mum,’ but the moment was fleeting. “She said her basic first words like mum, dad, nanna, and hi, but then she started losing the abilities she had,” she said.

Now, Ms Lawford’s heart sank even more after learning that her daughter’s time may be up as she starts to lose her sight. “We’ve been told her hearing and sight will go when it is closer to the end, and I think she is starting to go blind,” she said.

Yet, through all these, Ms Lawford said that what kept Indie strong is her ‘will to live.’