Mother Indian Link’s

Sweety Makwana will use prize money towards funding Mission Twisha

BY USHA RAMANUJAM ARVIND

I am only one of the many faces of Oesophageal Atresia. I am only one, with a small voice but great hope. While there is no cure for TOF/OA, there is hope, and where there is hope, there are miracles… (www.twishamakwana.com)

Sweety Makwana and her bubbly toddler make it a point to attend every Indian event possible.

Dressed up in their weekend best, they always turn up at Bhangra, Dandiya and Bollywood Nites, gala dinners, fundraisers, charity bashes and such like. But unlike most partygoers, the duo is hardly there for the good time. They would love to sing and dance no doubt, but not in the foreseeable future.

Instead, for Sweety, these events are a muchawaited opportunity to hand out pamphlets and raise awareness about Twisha’s medical condition.

Sporting a brave smile, the single mum is on an ambitious odyssey - to find a permanent solution for her only child through a life-changing surgery. With this aim, she has launched Mission Twisha, a multipronged fundraising campaign that desperately seeks to raise $800,000 for the project.

Effervescent, naughty and attention seeking, the adorable Twisha might seem like any other two-year-old to the average onlooker. Her pretty frocks and cherubic demeanour hide a heartwrenching tale, the twenty-sevenmonth old cannot eat normal food and is not likely to, unless she can access urgent correctional surgery. For most human beings, eating is not just a much-savoured experience, but also a basic instinct.

Twisha suffers from a very rare medical condition called Long Gap Oesophageal Atresia (LGOA). She has already undergone over 20 major surgeries in the past 24 months and certainly received the best possible medical attention that Westmead Children’s Hospital can provide, but with limited success.

There is still a gaping hole in her food pipe. For the moment expert surgeons have fitted her abdomen with a little flap (gastronomy button) through which a nutritionally balanced baby formula is injected five to eight times a day. As a result of this, her weight gain is normal and she is generally healthy and happy, despite the surrounding trauma. She also receives “fake” oral feeds, a messy and laborious procedure, to keep her sensory reflexes alive.

Affecting 1 in 5000 children, LGOA is a congenital medical condition affecting the alimentary canal. Quite simply, the food tract fails to develop as a continual passage while in the womb and instead ends in a blind sac. It is identified at birth primarily through excess salivation and resultant embryological development, the reason for this birth defect is

Correctional surgery at birth, known as anastomosis is the preferred solution (sewing together the two ends of the undeveloped oesophagus using fine sutures). For infants with long gap EA (the condition which Twisha has), however, management and treatment is a major surgical challenge.

Currently, Boston Children’s Hospital is the only known centre in the world with proven success. Pioneered and perfected by Dr Foker, the delicate surgery involves traction sutures in the tiny oesophageal ends. Tension is placed on these sutures daily, pulling on them slightly until the ends grow close enough to be

While Twisha has undergone multiple procedures here, “replicating” the Foker technique, the desired outcomes have not been achieved unfortunately. Sweety Makwana is now determined to give her daughter a normal and secure future by taking her to Dr Foker. The procedure however comes at an eye popping price tag - $800,000 besides incidental costs for

Raising the whopping figure in a short span can be quite an ask for well-provided families, the figure is quite simply unattainable for Sweety Makwana.

A victim of relationship abuse and domestic violence, Sweety was turned out of her home by her former husband, when Twisha was only five months old.

“When it is a battle for survival, there is no time for emotions like grief and self pity. My child’s needs are much greater than mine and for her sake I have learnt to be brave”

Blamed for “producing a defective child” as Sweety bluntly puts it, she became a destitute, with no family in Australia and very few friends. As Twisha’s sole primary carer, Sweety is unable to seek employment as well. Currently she subsists on Centrelink’s carer payment and lives in shared accommodation at Westmead.

Given Twisha’s complex medical requirements, Sweety cannot access childcare as well, putting enormous physical and mental strain on the single mother. Sweety’s repeated appeals for a federal grant to aid the US surgery were shot down recently as the government believes Twisha could undergo alternative therapies in Australia.

With no other means to raise the amount, Sweety has turned to the Indian community, using the social media and public events to highlight her toddler’s cause.

“My daughter has the right to lead a normal life just like anyone else and I am determined to fight for her dignity,” appeals the emotional mother.

Between fundraising and caring for Twisha, Sweety has virtually no time or energy for anything else. “When it is a battle for survival, there is no time for emotions like grief and self pity. My child’s needs are much greater than mine and for her sake I have learnt to be brave,” she confesses.

For Sweety though, Twisha is