| Petaling Jaya, Malaysia | 7 Jan 2016 | Asia Samachar |
By Jasrinder Kaur
Four-year old Mareesa Kaur Ghai attended the second day of kindergarten today. Like other kids her age, she was excited and nervous at the same time.
But this tough little girl has a medical challenge that makes things more challenging for her. She had fused skull, fingers and toes in what is known as the Apert syndrome. The growth of the skull, fingers and toes is not that of a normal child. The fingers, for example, look like they are knotted together.
Mareesa has undergone five surgeries in Malaysia and Australia. She has been undergoing physiotherapy and scar management with the dermatologist to settle the skin and reduce the scar on the wound where grafting is done.
But the task is far from over. She is scheduled for her next major corrective surgery on 13 Feb in Adelaide.
“Her surgeries involve a lot of skin grafting. It’s a very painful procedure to ensure that the scars are not visible,” her father Gurmeet Singh Ghai tells Asia Samachar.
“Having a child like this is not easy. But with Waheguru’s kirpa, we find the strength to help her. I want her to have all five fingers, like an ordinary child. I don’t want her to have any loss of fingers.”
Apert syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis), according to one description of the syndrome. The early fusion prevents the skull from growing normally and affects the shape of the head and face. In addition, a varied number of fingers and toes are fused together (syndactyly).
Mareesa was was born with a 30% fuse in the skull, while all her fingers and toes were fused.
“I began researching online. I got to know of the Australian Craniomaxillofacial Foundation (ACF). I approached them and they agreed to include Mareesa as part of their treatment programme,” he said.
Mareesa underwent her first surgery when she was seven months old to have the frontal orbit advancement, releasing the main thumbs and little fingers, at the Women Children Hospital in Adelaide by a team headed by Prof David in 2012.
Prof David, who heads the Australian Craniofacial Unit and is the ACF president, is a specialist in the area of craniomaxillofacial surgery and, plastic and reconstructive surgery.
ACFU is a medical centre for the treatment and care of birth anomalies and traumatic injury of the head and face.
The toes were separated in two stages in surgeries at the Universiti Malaya Specialist Centre by a team headed by Prof Datuk Dr Tunku Sara Ahmad Yahaya.
Gurdwara Sahib Petaling Jaya (GSPJ) had recently joined efforts to raise funds for Mareesa’s next surgery at the Adelaide Memorial Hospital by Isaac Harvey and a team of plastic and microhand surgeons on 13 Feb.
Gurmeet, wife and his two children live in Subang Jaya and frequents the Gurdwara Sahib Petaling Jaya.
The surgery itself will cost AU$25,000 (close to RM80,000), excluding post/change of dressing, tavelling, food, accomodation and flights for Mareesa and the father.
“I’m still short of my target. I welcome the financial help. I will be going on an unpaid leave for six weeks when we take her to Australia for the surgery,” said Gurmeet who works as an in-house legal counsellor in a liquidator’s office.
Gurmeet has raised about half the amount required from his personal savings and contributions. GSPJ had collected about RM8,000 at a fund raiser during the new year eve night programme.
The father and daughter will leave for Australia on 8 Feb. In the meantime, Mareesa’s mum Alisha Kaur, 41, and brother Ishvyn Singh, 15, will be staying back, praying for everything to proceed smoothly.
Mareesa turns four on 11 Jan.
DONATIONS: Those interested to help can bank in funds direct to Gurmeet Singh’s bank account. No 4661411321 Bank: Public Bank.
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