Members of the business and medical community showed off some of Wollongong’s famous community spirit on Saturday when they provided some generous support to Ruby McLean, 2, and her Woonona family.
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Ruby was diagnosed with a degenerative disease called spinal muscular atrophy (SMA) when she was just nine months old. When six businesses heard her story at the Disability Trust Ball at Wests Illawarra they decided to pool their resources and give her family $30,000 to assist with modifications to make the family home more accessible and comfortable for Ruby.
Towards the end of the night Aster Group chief executive Daniel Munk surprised Ruby and her parents Haley Simpson and Mitch McLean who suddenly had 30,000 more reasons to smile.
Mr Munk said Wests Illawarra, The Shellharbour Club, The Fraternity Club, Tradies (Helensburgh), Kimi Kimi Cleaning Services and United Technology Services had all put in $5000. Many other businesses and individuals were so generous on the night they also raised $133.000 raised for the Disability Trust and Kids Fund. It included Dr Sharad Tamhane, Dr Lata Tamhane, Dr Cedric Fernandez and Usha Fernandez making a presentation of $20,000 that was raised at the Taj Mahal Ball. That event also contributed $30,000 to TIGS Sony Camp run with the Disability Trust.
Ms Simpson said the family has been on an interesting journey and can’t thank the Disability Trust and everyone enough. “I don’t think I can really explain or express everything we have gone through since diagnosis and how much our life has changed”.
Mr McLean could not thank everyone enough. “This is just unbelievable. You guys don’t understand just how helpful you are to families like us”.
Organisational development executive manager Matthew Martin said the Disability Trust was always overwhelmed at the generosity of the community and people’s willingness to make a difference for local children with disabilities.
Recently Ruby became the second child in Australia with the rare muscle-wasting disease to get access to a life-changing drug called Nusinersen on compassionate grounds. Its presently the subject of clinical trials for the treatment of (SMA) but Ruby’s family is now able to get access to one of the most expensive treatments in the world for free from the drug's supplier Biogen which is already approved for use for SMA patients in the US but not Australia.
While Ruby will never be able to walk but impressed everyone with her mobility in a special motorised wheelchair. Her rare condition is degenerative and there is no cure. But the first four injections of Nusinersen into her spine have already given her some more movement and provided the family some hope that the drug will help slow down the effects of the disease and give her a better quality of life. “At the end of August she is due for her fifth injection.”
“Each injection is $125,000US. In the first year of injections she gets seven. But having treatment and seeing the gains she has made is indescribable,” Ms Simpson said.
“The next injection will be the first time she has gone under sedation. It is a little nerve-racking because we don’t know how she is going to go and whether she is going to cope with it okay.”
A fundraiser for Ruby is being held at Beaches Hotel, Thirroul on August 12.
“When we first got the diagnosis we had a little two bedroom unit and unfortunately that wasn’t in a very good condition. So we sold that and purchased a house in Woonona. It was just a little fibro miners cottage that needed to be gutted completely. We are about half way through. We have made an accessible bathroom for he and set up the kids rooms. We also have a son named Henry who is 11 months old. We have basically got to a point where we can’t go any further. We have holes in the ceiling and we don’t have a lot of things that make a home a home. But we will get there. It is a slow process. We are on a single income and when people like Disability Trust and Kids Fund comes along and are able to give us life changing equipment it means the world to us.”
Ms Simpson said she and Mr McLean where happy to go without cudboards and floor boards themselves they just want what will ever help Ruby be strong.
Mr McLean spoke about one item, a special bike that has been made especially for Ruby recently.
And anyone who saw her getting around in her motorised wheelchair at the ball understood what he was talking about.
“She is a little rev-head and wants to go faster and she wants to do spins. She wants to do everything little kids want to do.”