Drawing upon their Nepalese heritage, Sujana and Ashish felt that Arav, which means “calm and peaceful”, was the perfect name. And while now seven years old, and certainly more active and less quiet, Arav continues to demonstrate a calm personality as well as a considerate one.
Arav was born with limb differences affecting all four of his limbs, something that wasn’t discovered until after his birth. “It was a complete shock to us both when we saw Arav’s limb differences and really scared to hear he would need amputation and other surgeries so he could be an active little boy,” Sujana shared.
Arav was born with a congenital limb deficiency of his right foot which would prevent walking, webbed fingers (syndactyly) in both his right and left hands, and one missing toe on his left foot. In 2015, before turning two, Arav had three surgeries so that he could walk and gain more function in his hands. The first two involved procedures to release fused fingers. The second was a Symes amputation of his right foot that would allow him to wear a prosthesis. “We were scared before each surgery, but we knew these would give him the best start in life. The doctors are now proposing another surgery to create a thumb and more ability to grip. But we’ve decided to wait until Arav is a little older so that he can be part of this decision,” Sujana explained.
Sujana and Ashish moved to Australia from the beautiful country of Nepal, home to Mount Everest and a rich cultural history. “We came here in 2009 so I could attend University and complete a Bachelor of Commerce. After finishing my University studies we were thrilled to discover I was pregnant in 2013, and it was such an honour to give birth to our Australian son,” Sujana recalled. Over the last 11 years, the family has been welcomed into the Australian way of life and is why they wanted to stay here and continue to be part of our society. Their contribution to our community is evident in both their professional and volunteer activity. “After completing my degree I started as an aged care assistant, an industry I’ve continued to work in as I love being able to learn from and meet the needs of our elders,” Sujana shared.
Sujana also voluntarily offers peer support to other families just starting on the limb difference journey, after having received peer support herself when Arav was young. “I was so lucky to have Limbs 4 Life connect us to Patricia, the Mum of Paralympian Sarah Walsh, when Arav was a baby. Through Patricia I learned that Arav’s disability wouldn’t define him, but with the right supports and a positive attitude he could achieve any goals he set. I can’t thank Patricia and Sarah enough for all of their guidance, and at a time when we needed it the most,” Sujana shared.
Now in Grade 2, Arav is attending a school that has always shown understanding and kindness. “Initially the teachers were nervous as they hadn’t taught a child with limb differences and wanted to do everything possible to ensure he wouldn’t fall behind socially or academically,” Sujana recalled. The educators have always involved Arav and his parents in any decisions about supports or ways of talking about limb difference with other students.
In Prep the school floated the idea of Arav speaking to all classes about his prosthesis and why he wears one. “We all thought it would help the students to understand, reduce any fears and allow Arav to speak about it, in his own way,” Sujana explained. Arav thought this was a good idea and he confidently responded to students’ questions when he visited each class. “Arav became a very well-known student around the school, and each time he gets a new prosthesis everyone is fascinated by the design he has selected,” Sujana remarked.
Arav’s caring nature, and the school’s inclusivity, is something Sujana feels has helped him develop self-confidence and willingness to support other students.
Last year Arav learned that another student, who is quite shy, was not being accepted by some other students. So, Arav took it upon himself to speak to these students about why it’s important to be kind and support to others. Pleasingly, it helped this student to feel more supported and less nervous in the playground. “I was so impressed to learn that Arav had done this, and the little boy’s parents were so grateful to Arav for what he did and to us for raising a confident and accepting son,” Sujana shared.
Living with limb differences has not held Arav back from exploring activities that interest him, all of which help him build strength in his legs and fine motor skills in his hand. Outside of school, Arav actively participates in little athletics, swimming and an arts program. “At the moment Arav competes against all children of the same age, but when he turns eight he’ll move into a disability sports category so he can race against others with a physical disability,” Sujana explained.
A common question that parents ask Limbs 4 Life after learning their child will have a limb difference is “will my child be able to do all the things that other children do?”. And while we can say that with the right supports this is certainly possible, nothing speaks more volume than advice offered by parents with lived experience. Sujana feels that several approaches can help. “I think if you are confident your children learn from that, become resilient and feel proud themselves. And it’s important to realise your child can try everything they’re interested in but may use unique techniques to achieve their goals. And I also think if you don’t over-emphasise limb difference, then it normalises it for your child and creates acceptance among others too,” Sujana noted.
Sujana is proud to be part of a community where “we openly talk about disabilities but it’s upon us all to make sure everyone understands it’s OK to be different”.