Roslyn Krouskos (photo) lost her one-year-old daughter of Spinal Muscular Atrophy, and her struggle to see treatment for the rare disease become more affordable has moved the Morrison family
Jenny Morrison met Roslyn Krouskos through her daughters' school in the Sutherland Shire, south of Sydney.
The couple first joined their children, before forging a strong friendship that would lead the Prime Minister's wife to become a proud ambassador of Spinal Muscular Atrophy Australia – and encourage her husband to do the same.
Mrs. Krouskos lost her one-year-old daughter Angie to Spinal Muscular Atrophy about 10 years ago, and her friend & # 39; Jen & # 39; knew of her determination to help find better treatments for the deadly condition.
When Julie Cini, CEO of SMA Australia, was to speak in parliament about Spinraza, a new drug that would allow the diagnosed person to rebuild the muscles that wasted the disease, Mrs. Krouskos asked for help.
The drug, which must be administered four times a year, costs more than $ 367,850 each year.
SMA Australia campaigned to have the drug put on the PBS, which would bring the price to just over a hundred dollars.
Mrs. Krouskos texting at Jenny and asked if her husband could just keep listening. With a bit of luck, the now Prime Minister found the time and spent half an hour listening to Mrs. Cini, who herself lost two children to SMA.
& # 39; Scott showed up – he was the treasurer then – and we expected him to stay a few minutes, and he stayed for half an hour, & # 39; said Mrs. Cini. & # 39; He was really pleased with our cause and that started to assume his dedication to us. & # 39;
Jenny Morrison met Mrs. Krouskos through their children's school and the couple became close friends. Jenny encouraged her prime minister to attend a conversation about SMA and he also became committed to helping reduce treatment
Julie Cini (right), the CEO of SMA Australia, spoke at a forum in the Parliament when Mrs. Krouskos (left) asked Jenny to see if Scott would come over. The nu-PM remained for half an hour – much longer than expected
With a push from Morrison, Spinraza was listed on the PBS in 2018.
"For these children, for their families, there is no more essential service than keeping their children alive," he told Nine News before the 2018 budget.
Morrison revealed that it was the forum in Canberra and Mrs. Krouskos who had sparked his interest in SMA and Spinraza.
& # 39; I have looked at it much more, & # 39; he said.
& # 39; I sat down with Greg Hunt and the prime minister and others and we said this is something you should do. & # 39;
The advocacy of the Morrison family has done wonders for families such as Dean Tangimetua.
Dean was diagnosed with SMA 3 when he was 15 months old. By the time he was nine, he couldn't walk at all and needed a wheelchair to get around.
His parents, Cindy and TJ, initially said they thought their son was just developing slowly, but after the birth of their second child, they knew something was wrong.
& # 39; We went to the children's hospital, to the bone clinic, when he was about 15 months old, and I said I didn't leave before you told me – something is wrong, & # 39; said Mrs. Tangimetua.
The mention of Spinraza on the PBS has done wonders for families such as Dean Tangimetua & # 39; s. Dean was diagnosed at just 15 months of age, and the drug helps regenerate his muscles
WHAT IS SPINAL MUSCULAR ATROPHY?
Spinal Muscular Atrophy (SMA) is a rare genetic muscle wasting disease that is the childhood version of motor neuron disease.
While 1 in 35 Australians carry the gene, only 1 in 10,000 live births results in a diagnosis.
The disease not only affects the muscles that you see, such as your arms and legs, but all the muscles that you cannot see, such as your breathing, coughing, and swallowing.
Some types of SMA result in a very short lifespan, but others can live well until adulthood.
There are four types of SMA.
Type 1 is usually diagnosed within the first 6 months of life – and often before the age of 3 months. SMA1 is the most serious form of all spinal muscle atrophy with a high death rate.
The onset of SMA type 2 symptoms is usually between seven and eighteen months of age.
Parents often notice that milestones such as sitting are delayed. These children eventually develop the ability to sit unsupported, but they may need some help to get into a sitting position.
Some children with type 2 SMA can crawl or stand with help or support, but usually never walk.
Type 3 SMA varies in severity depending on the age first diagnosed, although children tend to be diagnosed somewhere between 18 months of age and early adolescence. Most are diagnosed before the age of three.
Most children with SMA III can stand and walk, but have difficulty with motor skills, such as climbing and descending stairs; their varying degrees of muscle weakness can be so mild that no medical help is sought for years.
The disease progresses slowly and the general course is mild. Many patients have normal life expectancy.
Source: SMA Australia
The mother of two said Dean was fine at pre-school, where his wheelchair was hardly questioned and he easily made friends, but the younger was afraid of going to primary school, afraid of the questions he asked of his colleague & # 39 ; s would get.
& # 39; He was worried about what people would think he would be sitting in his chair, and all questions, & # 39; said Mr. Tangimetua.
In early 2019, Dean moved to Baldface Public School in Blakehurst, St George.
Baldface Public School, where Dean started this year with year 5, has quickly made changes to ensure that he can easily walk around in his wheelchair (photo: Dean and his brother)
Since his arrival, the school has adjusted his water taps so that Dean can fill the bottle from his seat and is considering laying a concrete path across the lawn so that Dean and another student with SMA can move freely through the playground.
On Wednesday, Dean helped unveil a mural of a scene from Zac's Play Day – a children's book that Zac follows the zebra who has SMA while he goes to the park with his brother Ziggy.
The painted scene shows how Zac goes to Baldface Public school and leads the way in his wheelchair while the other animals follow him, in backpacks.
Mr. Tangimetua said that hearing a mural of a SMA character painted on a wall at his son's school & # 39; a bit of a spin-out & # 39; used to be.
& # 39; This school has really accepted us, & # 39; said Mrs. Tangietua. & # 39; It has gone much further than necessary.
SMA Australia is now campaigning for a heel prick test at birth to detect spinal muscle atrophy.
The school even went as far as setting up a mural outside their school room based on a book where the main character, Zac de Zebra, has SMA (photo). The mural was unveiled by Dean on Wednesday
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