Laptop (Charlotte – Type 2 SMA)
I would like to say a big thankyou to Spinal Muscular Atrophy Association of Australia for the support and advice they have given to our family over the past 5 years.
My daughter has Spinal Muscular Atrophy Type 2 and was diagnosed in 26th February 2005, 3 days before my youngest daughter was born. Charlotte is a twin and was diagnosed at the age of 22 months. As you can guess we were devastated, not only for our daughter but the fear of the unknown outcomes of our other two children. We had never heard of such a disease let alone trying to live with it.
After we told family, and giving birth we did what most families would do, we “google” From this little bit of technology, we met Julie and the late Ross over the internet. A very important friendship grows. Even though it took 4 years for Julie and myself to meet every Thursday night we would jump on line and speak to them about living life with Spinal Muscular Atrophy Association of Australia. From these simple yet valuable conversations, life seem to a little brighter. Julie and Ross introduced us to other families within Australia to listen to their stories. Just having another human going through the same thing is priceless.
Within the last 5 years I have seen the vision of Julie and Ross grow into a reality and is very proud to have been on this journey with them. We are now through the association supporting other families just the way Julie and Ross supported us.
Due to the hard work of Julie and her team, the Association has gone from supporting us through advice to supporting us with equipment. I really believe that an individual who has never had to live with a person does not realise the emotional and financial drain a disability has on a family. Without the support of SMAAA we could not have purchased a walking frame for Charlotte. This walking frame allowed Charlotte to experience the freedom of using her legs like her sisters. As Charlotte grows, so does her needs. The SMAAA has just approved the funding for a laptop and programs to go with them, as Charlotte’s fine motor skills are deteriorating and she can no longer write.
In the future Charlotte will need a cough assist machine, specialised bedding and eating equipment. I honestly do not know how our family would cope without the support from the association. We truly believe that SMAAA is a valueable part of our lives and makes our life a little bit easier.
Pool Hoist (Zoe – Type 3 SMA)
SMAAA provides an invaluable service to its members including emotional support, counseling and much needed funds to assist families.
Zoe is 14 years old and has Spinal Muscular Atrophy Type III. As a result of her condition, Zoe’s leg muscles are not strong enough to support her, she is unable to weight bear and therefore unable to walk or exercise like other young people her age. Zoe is, however, able to swim and do aqua aerobics as the water provides her with the support she needs. Once Zoe is in the water she is independent and can undertake valuable exercise. The stumbling block was how to get Zoe in and out of the pool. The solution to this problem was a Pool Hoist; but this solution is a costly one; $6000.00 to be exact.
This is where SMAAA comes in. As well as providing emotional support and guidance to families living with Spinal Muscular Atrophy Association of Australia, SMAAA also provides financial assistance to purchase necessary equipment. Spinal Muscular Atrophy Association of Australia affects each person differently and over the years, each person requires various different pieces of equipment to assist them in their daily lives to maintain and maximize their independence. Medical equipment and living aids are very expensive and constantly purchasing these items puts a strain on family finances – a strain families living with Spinal Muscular Atrophy Association of Australia can do without. The generous support of SMAAA alleviates some of the financial stress placed upon families living with this condition. Requests for financial assistance from SMAAA are treated on an individual, case-by-case basis. The needs of the individual are considered first and foremost; what does this person need to assist their day to day living SMAAA treats each person living with Spinal Muscular Atrophy Association of Australia with respect, compassion, understanding and empathy and strives for a positive outcome.
The condition of Spinal Muscular Atrophy Association of Australia does not financially discriminate; families from all walks of life are affected by this condition and without the assistance of SMAAA the purchase of necessary equipment may not always be possible. If a child is unable to obtain the correct equipment needed, this has a negative impact on their quality of life, making an already difficult situation even more difficult.