Here is an article that appeared in indiatimes.com urging readers to be generous with their contribution.I am only requesting you to read this piece and take an informed decision to make a difference to someone who may never get know you today,or ever again............
Mother's Day Special: Twisha Makwana: A 'Normal' Child Who Can Not
Eat
May 8, 2014
Little Twisha Makwana was born in 2011 with an esophagus that
stops short of her stomach - leaving her little chance of ever living a normal
life - but the 30-year-old Australian toddler's mother Sweety Makwana,
determined to give her 3-year-old her best shot, has brought her to Boston in
hopes of getting a $1.2 million operation she can't afford...
When and how did you come to
know of Twisha's condition?
Twisha's condition was diagnosed soon after her Birth. An X-ray confirmed Long Gap Esophageal Atresia (LGOA), one of the rare birth defect. This condition means, Twisha is born with an incomplete Esophagus, which doesn't connect to her stomach. She has quite a long gap between her Esophageal pouch. During the pregnancy doctors were suspecting some kind of birth defect. I was told nearly 8 -10 kind of birth defects and Twisha might have one of them and along with the possibility of her being a normal child.
Please tell us what Twisha has gone/is going through...
Twisha's condition was diagnosed soon after her Birth. An X-ray confirmed Long Gap Esophageal Atresia (LGOA), one of the rare birth defect. This condition means, Twisha is born with an incomplete Esophagus, which doesn't connect to her stomach. She has quite a long gap between her Esophageal pouch. During the pregnancy doctors were suspecting some kind of birth defect. I was told nearly 8 -10 kind of birth defects and Twisha might have one of them and along with the possibility of her being a normal child.
Please tell us what Twisha has gone/is going through...
Soon After Twisha's birth, she was diagnosed with LGOA. Australian surgeons tried Foker type operation on Twisha, without any previous experience. It failed terribly.
(Foker treatment is the proposed treatment at Boston as re-attempt) After failed Foker Treatment, Twisha has undergone multiple Kimura Lengthening procedures (few step-wise surgeries, where upper Esophagus is being stretched further down on chest wall in each operation), which was also never been performed by her surgeon ever, before doing it on Twisha. This treatment was applied various times and a successful outcome was not obtained on all occasions.
About Foker Treatment: The Foker Technique includes complicated multiple surgeries and requires lengthy ICU stay (6 Months – 2 Years). It requires extensive training and experience for the surgeons to achieve success in it. In this treatment it is necessary to put the baby under heavy sedation and induced paralytic state for couple of weeks or months to allow the growth of the missing Esophagus by applying traction sutures (tension to both Esophageal ends). Once both the Esophageal ends are grown enough to overlap each other, they are sewn together.
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| Twisha with Esophageal pouch |
Twisha at present: Since birth, Twisha is fed via her
Gastrostomy Button (P.E.G Feed). By attaching an external tube to her
Gastrostomy Button, I inject formula Milk (Peadiasure) directly into her
digestive system, (i.e. stomach) to keep Twisha alive. Since Twisha’s birth,
she is only on Milk diet and despite of what so ever she has gone through,
miraculously she is keeping well in her overall growth. With clothes on, she
looks like a little princess angel!
To manage Twisha’s secretion, she has Spit Fistula/ Esophagostoma on right side of her chest. She is allowed to have Sham/fake feed by mouth that is only for her to taste and learn sucking, chewing & swallowing by 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, she has to undergo dilation 2 times a week.
What do the doctors say...
After many failed surgeries on Twisha, Australian surgeons have offered me Gastric Pull Up, Colon Interposition, Gastric Tube. These treatments are called replacement procedures, which will damage Twisha’s other body organs (such as stomach or colon or intestines, etc.). These will also leave her with physical deformity and other medical complications and medicines for the rest of her life, which can be life threatening.
Where in Boston, USA, after the consultation, surgeons say, there are still chances to cure Twisha by Foker Treatment; however Twisha's case is very complicated due to all those past failed surgeries.
Medical science says, Native Esophagus is the best in long term repair of LGOA.
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| Twisha with mother Sweetyneeds urgent help |
What keeps you going...
Twisha is my biggest inspiration. I am inspired by her a lot. She always keeps smiling, even though she is born with such a rare birth defect, which could have taken her life. She is very happy and jolly, bubbly little girl, who can't see tears in my eyes. She is boosting my confidence in me by her unconditional love for me. I am learning from her every day. I am being selected by God to care for such a lovely child and for that I feel blessed.
Also, since I have started the Mission Twisha to find Twisha's cure, I have met so many kind and humble people, who have had helped me. Their kindness, humbleness and generosity keep me going.
I have had won the title of "Indian Link Mother of the Year 2013-14 Award". Such kind of recognition also inspires me.
I have lots of faith in God. Having faith in God, we keep going as he directs us. I am doing my best, God will do the rest!
What message do you wish to send across on Mother's Day...
I believe, being a full-time mother is one of the highest salaried jobs. Since the payment is pure love. A mother is a woman who is created by God to bring love, joy, happiness and caring into this world. I am so glad; God has created a woman to be a mother. Happy Mother's Day!
To know more about Twisha's
condition, click here. Contact
Sweety Makwana atmissiontwisha@gmail.com and +61-425-147-970
PS: Sweety's husband forced her to leave his house, when Twisha
was only 5 months old. Her in-laws have never seen Twisha and never offered any
kind of help and support. Sweety was blamed for giving birth to such a faulty
child like Twisha. Divorce was granted even without her consent (Because of
Australian Law). There is no maintenance for Twisha and Sweety. Twisha and her
mother are in terrible condition, No normal life at all. Sweety's time is
occupied providing care for Twisha and Fundraising. Please be generous and
donate via www.twishamakwana.com
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