MEDIA RELEASE
For Immediate Release
SHINING A LIGHT INTO THE DARKNESS - SPINAL MUSCULAR ATROPHY
Any one who has ever held their new born bundle in their arms knows the joy of breathing a sigh of relief when all seems normal, and as a recent first time grandmother I can share the joy. Sadly this was not the experience for local grandmother Rhonda Vijsma of Twin Waters.
Rhonda’s 2 ˝ year old grandson Kazi Johnston was diagnosed with the almost unheard of condition, Spinal Muscular Atrophy at just 13 months. Spinal Muscular Atrophy (SMA) is the most severe form of motor nuron disease and the number one genetic killer of children under 2 years of age.
Depending on the severity of SMA, some children never sit, stand or run, breathing difficulties can prove fatal. An otherwise bright normal and happy child with the condition may present as being extremely weak physically and may well face an early death. Yet, very few people have heard of the condition. 1 in 30 people carry the recessive RSA gene but if both parents are carriers, they face a 1 in 4 chance in every pregnancy that their child will have SMA and a possible death sentence.
This week SMAA have teamed up with eFundraising and their Swipe2give program to get cards out into the community, encouraging locals to shop and support local business while at the same time raising much needed funds for support of families affected by this life threatening disease. Many families with a child suffering this condition are faced with severe financial hardship and we need to pull together as a community, to shine a light into the darkness of this heartbreaking condition. Knowledge is powerful but compassion strengthens the heart.
For more information on Spinal Muscular Atrophy go to www.smaaustralia.com or call Rhonda Vijsma on 5448 8003. For more on efundraising go to www.swipe2give.com.au or call Fiona Ward on 0419 646 851
Contact Details
Fiona Ward
Media and Launch Co-ordinator
Mobile- 0419 646 851