Helping those who help themselves!
As an MP, I try to go the extra mile in supporting all my constituents – men, women, tradies, executives, right or left-leaning.?
However, as my Facebook page attests, there is one demographic that is closest to my heart, our young ones. ??
Visiting schools and interacting with children, their families and teachers are by far the highlight of my work as an MP. To me, each school community is a microcosm of Victoria – each reflecting our changing character in real time right before my very eyes. More than that, interacting with the school kids provides me with a front seat view into Victoria’s future – and I can honestly say, that future is bright.?
It is through one such school I have built a strong relationship with that I got to know a brave little five-year-old preppie, Ivani Pathre – and her parents, Bindushree Udevare and Chandas Pathre.?
This week I am appealing to you to help her family buy a car that can be modified to fit her power wheelchair.?
Ivani was born with an extremely rare condition – LAMA2-related muscular dystrophy. Every year, about 30 Australians are diagnosed with a congenital muscular disease. However, just one in 400,000 children around the world have the specific muscular condition that Ivani suffers from.
Ivani’s story was featured in The Guardian.?
Life is not easy for Ivani but I don’t want to talk about her disabilities because the little girl I met is so much more than her muscular dystrophy.
She is spirited, charming, smart, and watching her independently zip about in her power wheelchair is a sight to behold.?
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Unfortunately, the specific power wheelchair that gives Ivani so much independence and freedom is too big to fit in most cars. In fact, her parents have to use a taxi just to get her to and from school every day.?
This means that Ivani misses out on all the spontaneous experiences that made our childhoods special – going to parties, going to the picture theatres, simply visiting friends, going to the park, or heading out for a picnic with her parents and younger sister because the sun’s out!?
Ivani’s parents have finally found a car – a KIA Carnival – that can be suitably modified not just to accommodate the wheelchair but also include a foldable changing table, so that Ivani can be changed in privacy and dignity anywhere, something that is becoming critical as she grows older.
Unfortunately, according to current NDIS guidelines, there is no assistance available for families like Pathres to buy the new vehicle she needs.?
Ivani’s parents, both of whom are proud Indian immigrants (now also proud Aussie citizens) working in the IT sector, have privately raised most of the funds they need to buy the car and modify it – but are falling short of the last $15,000.?
So, with the encouragement of their awesome school community, they have set up a GoFundMe page to raise the last $15,000 (see, this is why I love schools!) and have already raised more than a third of their target.?
I always believe in helping those who help themselves, and I can tell you, this family goes above and beyond what most families will ever need to do to care for their own child without government assistance.?
That’s why I am asking you to open your heart (and your wallet) and transform little Ivani’s life.? I have set the ball rolling by making a $200 donation towards Ivani’s life of freedom and sunshine. What do you say….?