Indian Link’s Mother of the Year 2013

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 much-awaited 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 very only child through a life-changing surgery. With this aim, she has launched Mission Twisha, a multi-pronged 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 though, 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 choking or coughing.

Caused by abnormal embryological development, the reason for this birth defect is unknown.

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 sewn together.

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 travel and stay.

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. Blamed for “producing a defective child” as Sweetie 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 not just her mission but her life force too. She feels nothing but profound, unconditional love for her only child. “It’s terrific! To stay awake till early morning with tired eyes… feeling like vomiting, headache, back pain... having restless days and nights leading Mission Twisha ... Tomorrow Twisha will fill me with energy with her bright morning smile.”

Her poignant Facebook post sums up her rollercoaster journey since Twisha arrived.

Sweety had an inkling of a possible congenital defect during her second trimester ultrasound. She courageously chose to continue with the pregnancy in the hope that issues could be ironed out. Little did this delicately built young woman realise that she would soon be embarking on a perilous solo journey into the unknown. Adversity no doubt is a great character building exercise.

Two years on, Sweety has steadfastly not given up hope. In the face of acute physical hardships, she firmly believes in a miracle and is relentlessly chasing this dream.

So far, she has door knocked on many institutions seeking support for her herculean task.

United Indian Associations is one such organisation that has taken up her cause. They hope to lobby with senior politicians including Parramatta member Julie Owens to plead her case for government intervention.

“The Irish government has so far flown two children to Boston for fully paid surgery,” Sweety tells us.

She is still hoping for a positive outcome in Twisha’s appeal. In the meantime, she has mounted a renewed campaign for fundraising.

Her sheer courage and unwavering determination are saluted by some of her newest friends, (made along her bitter sweet journey called Mission Twisha) who nominated her for the Indian Link Mother of the Year award. Sweety was nominated by four separate individuals.

“She is not just the Indian Link Mother of the Year, but deserves

“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”

Sweety Makwana

to be named Australian mother of the year too,” says Adam Shah, one of the nominators.

“I salute her indomitable spirit. Behind this brave front is a vulnerable young woman, who is prepared to weather the biggest storms. Hers is not a happy position to be in,” he told Indian Link

“I first met Sweety and Twisha at a charity fundraiser at Bowman Hall on Valentine’s Day this year and later at the Fairfield Holi Mela,” adds Avleen Chand, another supporter. “She was up on stage and the MC highlighted

Twisha’s medical condition and the cost involved.

I was very disturbed and wondered how I could help her so I mentioned it to the girls in my volleyball group

- Golden Homes Desi Girls”.

Chand has lobbied her band of sisters to sell food packs at an upcoming event to raise money. They have created awareness campaigns in the social media.

“For me, Sweety is such a powerful role model who has not given up hope. She keeps approaching organisations or charity functions in a desperate attempt to raise any bit of money she can. She doesn’t have transport but travels far with her daughter searching for help. I think no other mother has been through such an ordeal on a daily basis,” Chand notes.

Moved by this story, real estate agent and sponsor of Chand’s team Sanjay Prasad has helped Sweety find a place within walking distance from the hospital. For Sweety, this has been a godsend, as she often needs to access emergency care in the middle of the night.

Only recently, Twisha accidentally swallowed her gastronomy button, triggering a choking fit.

A thoughtful neighbour delivers subsidises “dabba” service. Several others help her access weekly supplies from Salvation Army.

Sharina Shanaz, another person who nominated Sweety for the award, met Sweety at the same events and offered to drive her to another show.

“It was heart wrenching to see this young mother constantly talking to people, sometimes delivering the same message over and over again,” says Shanaz. “Since then I have taken Sweetie to other events where she is able to raise awareness for Twisha’s conditions through the distribution of pamphlets, setting up banners, talking to people and going up on stage for about five minutes and informing people about Twisha. Determined as she is, sometimes she is at the mercy of volunteers like me to drive her to these events and also organisers who can take at least five minutes from their time to allow Sweetie to come up on stage with Twisha. At some events I went to with her, the organisers have not been so kind and just could not find five minutes to talk about Twisha on stage. In these situations, when

Sweetie distributes the pamphlets, it gets thrown away, people don’t take it seriously and in the end we go around and collect all the discarded pamphlets. It costs Sweetie money to get it printed”.

It is Sweety’s mental strength that Shanaz admires more than anything else. “Despite facing all these difficulties, she still has big hopes for Twisha. She sincerely believes that Twisha can be cured and works around the clock.

Sweetie has inordinate amount of patience as Twisha needs care 24/7, she adds.

Rather than discussing her failed relationship or wallowing in self pity, she spends every spare moment on renewing her fundraising efforts, lauds Shahnaz.

“I know she is often depressed but she says that Twisha’s smile motivates her”.

It is Sweety’s never say never spirit that touched another nominator Sajida Bi. “‘Mother’s love is the fuel that enables a normal human being to do the impossible’ is one of the proverbs from her website and this is exactly what Sweety does day in and day out for her daughter. As a working mother of a two-year-old, I can deeply empathise,” she admits.

“Fundraising for such a big amount seems next to impossible for me but it is so inspiring to see Sweetie never losing faith and always turning up for various Indian events. A major award like this will boost her self confidence and help her profile”, she adds.

As the Indian Link team visit Sweety, she is in the middle of unpacking, tired from the physical demands of the move and relentless pressures of round the clock parenting but only too happy to talk.

Her eyes light up when she finds out her story will soon hit headlines. There is renewed hope that many more will offer a helping hand. She is grateful for the opportunity.

She is overjoyed when she finds out that she is Indian Link’s Mother of the Year. The award means a lot to her no doubt, but it is the prize money and the resultant publicity that mean even more. For Sweety Makwana time is of essence and every bit of help counts.

When her husband abandoned Sweety and returned to India, she had barely two friends. But, today thanks to Mission Twisha numerous complete strangers have befriended her. “I am so touched by their support. It proves to me that there is definitely a compassionate God and hope for