A little boy’s desire to make life easier was reason enough to get the wheels turning for a community organisation that reached out a helping hand.
Thomas has spinal muscular atrophy (SMA type 2), an inherited ocndition that affects the muscles.
It is characterised primarily by progressive weakness that develops in children from about six months of age, and is degenerative disease that is caused by mutations in the SMN1 gene.
Having the condition means Thomas, of Loftus, is unable to walk.
When the Lioness Club of Sutherland Shire read about his daily struggles in the Leader, members contacted his school, Loftus Public, to see how they could help..
The club hosted a trivia night on October 20, and raised $12,500. More than 240 people gathered for the event at Jannali Community Hall.
In addition to the successful evening, a further $10,000 will be donated from Australian Lions Foundation Grant.
The community initiative is a double win for Thomas this year. Earlier in 2018, the government announced it would include spinraza – the drug that treats SMA, on the Pharmaceutical Benefits Scheme (PBS) from June for children under 18 years of age.
Spinraza increases the body’s ability to produce SMN protein critical to the health of motor neurons.
The funds raised for the family means Thomas will be able to benefit from a wheelchair accessible vehicle.
Engadine Rotary and Sutherland Shire Toy Restoration Centre also lent their support.
