The campaign has attracted serious support from the public, but more help is needed.
Grace O’Malley from Robeen, County Mayo is nine years old.
Grace suffers from Spinal Muscular Atrophy Type 2, or SMA2, which she was diagnosed with when she was 18 months old when she failed to walk.
SMA refers to a group of inherited diseases of the motor nerves that result in muscle weakness and wasting.
Since her diagnosis, Grace has had to use a motorised wheelchair. Her parents, Paul and Lorraine, have seen their “beautiful, smart and kind” daughter deteriorate over time.
She has severe weakness in her legs, chest and spine. Recently, the degenerative condition has begun to affect her arms.
Grace is becoming increasingly prone to weakness of her respiratory function, particularly in coughing and clearing secretions which leads to serious complications, including the heightened risk of pneumonia and other infections.