Will You Help Save This 3.5-Yr-Old Girl?

Written by: Anonymous eMail submission

Twisha Makwana, a 3.5 years old little girl is born with pure Long Gap Oesophageal Atresia –LGOA with the gap of 4vbs/6cms, type B of TOF/OA. TOF/OA is rare congenital birth defect which occurs 1 in 4000 babies. The type of TOF/OA Twisha is born with is even rarer, only 7% of TOF/OA. This birth defect prevents her from eating/swallowing anything by mouth as there is a large gap between two ends of her Oesophagus. 

Twisha has already undergone around 20 major and minor operations on her little fragile body in Sydney, Australia, which have been failed to cure her and her food-pipe condition is even worsened. After many failed surgeries on Twisha, other alternate medical treatments are offered around the world, such as, Gastric Pull Up, Colon Interposition, and Gastric Tube. These treatments are called replacement procedures, which will  cause damage to Twisha’s other body organs (such as stomach or colon or intestines, etc.). These will also leave her with physical deformity and causes other medical complications and medicines for the rest of her life, which can be life threatening. Twisha is born with a defect in her Food-pipe; her mother, a single parent, does not want to cause damage to her stomach/colon, where there is still possibility to grow her own esophagus via “Foker Treatment” at Boston Children’s Hospital in USA. 

Australian surgeons tried Foker type operation on Twisha, without any previous experience. It failed terribly.  The Esophageal Atresia Treatment centre at Boston Children’s Hospital is the most renowned and advanced medical center that offers the world’s best Foker Treatment to cure patients like Twisha. The cost of this treatment is estimated to be $1.2M USD, which is beyond her poor mother’s reach. However, a courageous Sweety registered Mission Twisha Inc. charity in NSW, Australia and USA to fundraise and in two years have managed to raise $710K USD. A determined mother is nearer to her mission to save her only daughter but still way short of the actual amount of funds needed for her daughter’s medical treatment.

Sweety in her four years of marriage went through almost all forms of domestic violence. Despite this inhuman behavior and continuous torture, she tried to save her married life. However, she delivered a girl child with a rare birth defect; her ex-husband deserted her and 5 months old daughter and forced them to leave his house. He filed for divorce soon after and divorce was granted even without her consent due to Australian laws. There is no maintenance for Twisha and Sweety from her ex-husband (except for child support, which is less than a dollar a day!) Twisha’s mother is receiving income support from Australian Government’s Centrelink Department as, because of Twisha’s condition and her care she is not able to join any paid work.  In this difficulty, she on her own is facing the harsh realities of life every other day, taking care of Twisha day and night, with no family support in Australia. She is forced to raise funds through donors along with providing day to day home medical care to Twisha.

Sweety started Mission Twisha Charity in Australia to raise funds for the mammoth surgery. For her efforts to save her daughter at any cost, she was awarded “Indian link – Mother of the Year 2013” http://www.indianlink.com.au/epaper-archive/il-syd-may-13-1/1.html

The mother’s heart dies every minute she sees those holes on Twisha’s tiny tender body, she sees her crying when Twisha gets feed via tube, when Twisha undergoes the painful dilation every second day, when she sees other children going to schools and learning the lessons of childhood which Twisha is devoid of, when Twisha is denied small happiness like playing in a park, when she sees that Twisha wants to eat her favourite chips but the fear of choking haunts and holds her back… Life is too harsh on her. She deserves to live a normal life…  

If only 5000 People will donate 100$ each, Twisha will survive. Please donate generously to save Twisha. She is a brave girl and with your support will grow to become even stronger and help, heal and touch many lives in future. Please visit www.twishamakwana.com for more information on Twisha and ways to donate. You can contact her mother on +61-425-147-970 or email [email protected]

How Twisha Is Surviving Without Food Pipe: Soon after Twisha’s birth, surgeons made a hole in Twisha’s stomach through her belly and fixed a medical device called Gastrostomy Button. Since birth, Twisha is fed via her Gastrostomy Button. By attaching an external tube to her Gastrostomy Button, her mother Sweety, 31, injects formula Milk (Peadiasure) directly into her digestive system to keep Twisha alive.

To manage Twisha’s secretion, surgeons made another hole on right side of Twisha’s chest, where her upper short esophagus is kept open. This is called Spit Fistula/ Esophagostoma from where her saliva gets drained and is collected on a stomal pouch. She is allowed to have sham/fake feed by mouth that is only for her to taste and learn sucking, chewing & swallowing using jaw muscles. This helps her to prevent Oral Aversion. Any spits is being collected into a stomal pouch applied on the site Esophagostoma. The stomal pouch needs to be emptied and changed regularly, twice a day. Unfortunately, her Esophagostoma tends to get narrow very quickly. To keep it open, little Twisha has to undergo dilation 2 times a week.