Reading Time: 14 minutesIndian Link Mother of the Year 2013 prize going towards funding Mission Twisha, writes 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 heart-wrenching tale, the twenty-seven-month 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 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 my child,” she says courageously, fighting back tears.
Hopefully Baby Twisha will soon indulge in the simple everyday pleasures like nibbling on toast and sucking on lollies that most mothers take for granted.
Please support Mission Twisha. Visit her Facebook page or website. Donations are eagerly sought through Kids for Kids.
Runner up: Nandita Roy, nominated by sons Sumallya Roy and Sudeb Roy, daughters in law Anitha Roy and Srishti Roy, and grandaughters Sharanya Roy, Kiran Roy and Oviya Roy, Sydney
While nuclear families are the preferred norm these days,
Roybaari in the Blacktown suburb of Sydney is a happy testimonial of a fast eroding tradition, the joint family system. At the centre of Roybaari, which includes Sumallya and Sudeb, their wives Anitha and Janet, and kids, Srishti, Kiran, Sharanya and Oviya, is the matriarch – Nanditha Roy. But quite unlike most domineering mums, she has been the epitome of self-sacrifice and unconditional love.
“Mum, literally is the backbone of our family. We all live together as a happy family only because of her sincere affection, dedication and her nurturing and approachable attitude. It is a great feeling to be together as we all have learnt how to give space to each other. True, we have our ups and downs but mum’s personality shines through these difficult patches.” This heartfelt compliment comes not from Nanditha’s sons but her daughters in law.
The wheelchair bound Nanditha, who recently celebrated her sixtieth birthday was nominated for Indian Link’s Mother of the Year award by her tight-knit parivaar.
Nanditha’s tale is an inspirational one – of a woman who has braved innumerable personal hardships, without ever losing faith in core human values. Her life has been a long rollercoaster but there has been no room for bitterness or pessimism.
Raised in a traditional Bengali household at Kolkata, she moved to Bangalore at the age of seventeen after her wedding. Unfortunately, her marriage was short-lived as her locomotive engineer husband succumbed to cancer within a decade.
Overnight, she became the primary carer of her two boys (then aged 10 and 8). With little academic qualifications and no family support, Nanditha was forced to take up shift work at a local factory. Through sheer grit and determination, she not only raised her children, giving them a solid education but also managed to save enough to buy a small family home. In a cruel twist of fate, she was diagnosed with rheumatoid arthritis.
When close friends moved to Sydney, she opted to follow in their footsteps, making a brave decision to carve out a new future for herself and her boys in an unknown land. At the age of 42, she arrived in Sydney quite alone, except for a few contacts, who made the transition easier.
She soon found a job in an aged care facility and also enrolled in a Certificate III course to update her skill set.
By now, her older son had a secure job in Bangalore but Sudeb was still at university and quite a source of worry for the single mum.
Having established tentative roots in Australia, she now tried her best to bring her sons into the country. But her applications were rejected several times, as they were no longer in the dependent category. Nanditha flew back to Bangalore to support Anitha through her first pregnancy.
After much struggle, Sudeb finally migrated to Sydney in 2000. Sadly, Nanditha’s health deteriorated considerably around this time. She underwent multiple operations including knee replacements, forcing her to finally give up her job. High dosage of steroids has also led to limb deformations. But through these difficult periods, her deep commitment to her family never waned.
To her joy, her elder son and his family also relocated to Sydney in 2003, finally moving in with her. No longer the main breadwinner, Nanditha now devoted her energy to fostering love and affection to the extended household.
Affectionately called Thakurma (grandmother in Bengali), she has instilled a strong sense of tradition and values in the family. Respect for their individual identity coexists with a genuine desire to support each other.
“That is the best thing about her”, Anitha, her elder daughter in law notes. “She is the binding agent without ever squashing our personalities. She runs the household without ever being overbearing.”
Thakurma not only shops and cooks for the family but even feeds the children with her own hands, to this day despite the rheumatism. For Anitha and Janet, who both work full time, this is quite a relief, knowing that the family is well cared for. They readily chip in with housework and shopping, while Sumallya often takes over the kitchen on weekends, having inherited his mother’s fine culinary skills.
“In fact every one crowds round us at work the moment we open our lunch boxes, because mum has packed us something different every day”, Anitha admits.
Together, they have created a beautiful structure, where they all collaborate. Her frail health is their biggest worry. For this reason, Sudeb has now opted for shift work, so he is able to accompany her on numerous hospital trips.
Festivals and birthdays are quite an event at Roybaari. Ever since the grandchildren were born, Nanditha initiated a novel birthday celebration, where the child’s mother cooks five traditional dishes and fasts until the child has been fed and the whole family joins for a sumptuous repast.
Despite forging a strong Bengali identity, the family is truly multicultural and celebrates several religious festivals harmoniously, as Janet is Manglorean and Anitha a Malayali. The family enjoys experimenting with different cuisines. Macher jol and Aappam just as popular as ham sandwiches.
Despite being plagued by rheumatism, Nanditha travelled to Bangalore last year to renovate her house, spending eight months by herself overseeing the project.
While in Bangalore, she suffered multiple fractures injuring her spine, ribs and shoulders.
Today, she is wheelchair bound and spends more time in the hospital than at home. Her intake of medicines is more than her normal meals, as she has succumbed to many more chronic diseases over a period of time.
“But this has not kept her away from any of her routines as she still helps in all household chores and cooks for all of us and takes care of her grandchildren moving in her wheel chair,” Anitha is quick to point out.
As a mother, she has sacrificed a whole lot of happiness for the wellbeing of her children and their welfare. She is a self-made woman and a perfectionist, who makes all of us proud to be her kids, she added.
Runner up: Akila Ramarathinam, nominated by daughter Krishna Ramarathinam, Sydney
Sanatana Dharma champion, disability campaigner, linguist, educator and activist Akila Ramarathinam has received many awards for her tireless community efforts. But it is as a caring mother of her two children Krishna and Santoshi, that she is best remembered.
An economics graduate, Akila had a bright future in the finance industry. But she sacrificed her career to give 100% of her time to her special needs child Santoshi. In 2000, Santoshi was diagnosed with autism and severe intellectual disabilities. Since then Akila has not only supported her own daughter, but has also helped many others find meaning in life. Her infectious enthusiasm and genuine smile have inspired many to pull through difficult situations.
Akila’s husband Ramarathinam and son Krishna, have been extremely supportive of her efforts. In fact, it was Krishna, who inspired his mother to turn the stumbling block into a stepping-stone.
As a mother of a special needs child, Akila has been liaising with various organisations looking after children with special needs and frail aged adults. Since 2009, she has been organising day camps every year for special needs children and adults. As a part of the camp, various services, networking, respite facilities and support group organisations provide information for the benefit of special people.
The Vishwa Hindu Parishad general secretary has been a resident of Australia since 1988 and has also completely dedicated herself to the Hindu cause, promoting awareness in the mainstream.
Akila has been the driving force behind various community projects across Australia in the areas of public education, special needs and community welfare.
“The eternal values embodied in our philosophy and the sacred texts are the source of inspiration for my projects. As senior members of the community, it is our responsibility to involve and engage the youngsters and pass on our rich cultural heritage. Awards like these are an indication that the VHP Australia team is getting recognised by everyone, and our work is going in the right direction,” Akila told Indian Link.
Known for her infectious enthusiasm, willingness and dedication, Akila joined VHP Australia as a committee member in 2007. Since then, she has overseen the recruitment and training of a wide network of volunteers, who have been engaged in a range of activities.
Not content with her extensive commitments in New South Wales, Akila has also been responsible for establishing VHP’s Victoria and Queensland chapters. As well, she has inducted many members to Hindu Youth Australia (HYA). Her gregarious personality has helped her connect with the young, just as much as the old.
A prolific speaker, Akila has participated and presented papers at various conferences across the globe including Parliament of World Religions, International Coordinators Meet, and the World Hindu Women’s Conference, to name just a few. She has coordinated two Australian Hindu Conferences held in April 2008 and April 2009. Both of these conferences were well attended by representatives of the Australian Government, Indian organisations, temples and overseas experts.
It was at these conferences that Sydney Veda Pathashala and Hindu Social Services Foundation were born, Akila pointed out. Today, the Sydney Veda Pathashala is the only institution outside India teaching Sanskrit through weekend classes. She is also working hard to reinstate oral chanting to its formal glory. Akila has also been instrumental in organising Ekadasha Rudra Japam, Mahaa Vishnu Lakshaarchana and Mahaa Shivarathiri events at events across Australia.
Likewise, she has helped expand the Hindu education portfolio. In 2003, Akila facilitated the Hindu Scripture classes under the special religious education (SRE) provision of NSW Public Schools. At NSW public schools, as many as 6,000 children attend Hinduism classes every week. She has been responsible for preparing curriculum, coordinating and liaising with principals, as well recruiting and training voluntary teachers.
The Bala Samskar Kendra has been another pet project of Akila’s. Introducing children and young adults to all aspects of Hinduism through structured learning, the weekend schools have grown exponentially, and have spread to many suburbs. She liaised with NSW Department of Education & Community Language Program division to obtain recognition for these schools and procure school rooms for conducting classes. Both BSK and SVP have hosted annual days, holiday camps and workshops besides regular weekend classes.
Sweety Twisha, nominated by Adam Shah, Saajida Bi, Sharina Shanaz, Avleen Chand and Zabia Bano, Sydney
Nandita Roy, nominated by sons Sumallya Roy and Sudeb Roy, daughters-in-law Anitha Roy and Srishti Roy, and grandaughters Sharanya Roy, Kiran Roy and Oviya Roy, Sydney
Akila Ramarathinam, nominated by son Krishna Ramarathinam, Sydney
Kamini Sahni, nominated by daughter Shibani Sahni, Sydney
Kamlesh Saini, nominated by daughter Sheetal Saini, Melbourne
Kush Maharaj, nominated by daughter Kavita Maharaj, Brisbane
Jyoti Rao, nominated by children Jannavi Rao and Aryan Rao, Sydney
Anamika Srivastava, nominated by husband Saket, Melbourne
Asha Chand, nominated by daughter Eashna Chand, Sydney
Dr Sushama Deshpande, nominated by child Ananya Deshpande, Sydney
Dayawanti Garg, nominated by daughter-in-law Ruchika Mittal, Melbourne
Tanu Bhatia, nominated by daughter Hitika Bhatia, Perth
Sharmila Shankar, nominated by daughter Nivrita Shankar, Sydney
Nandini Thadani, nominated by daughter Preeti Thadani, Sydney
A big thank you to everyone who entered our Mother’s Day award!
Super mum Sweety
Reading Time: 14 minutesIndian Link Mother of the Year 2013 prize going towards funding Mission Twisha, writes Usha Ramanujam Arvind