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Baby Leane afflicted with rare genetic disease, jobless mum faces jail due to unpaid loans

Baby Leane, who suffers Trisomy 13 genetic abnormality, still needs corrective heart surgery after already undergoing 5 surgeries

  • Baby Leane with her father. The baby is suffering from a rare condition, which affects one in over 16,000 Image Credit: Courtesy: Carbonell family
  • Baby Leane with her mother. The baby is suffering from a rare condition, which affects one in over 16,000 neImage Credit: Courtesy: Carbonell family
Gulf News

Dubai: Time is running out for baby Leane Carbonell, who is in critical need of total corrective heart surgery before the end of 2017.

Joel Lamando Carbonell, and his wife — parents of the one year-old baby, who is suffering from a chromosomal condition called Trisomy 13 — have been struggling to find a doctor in the UAE who will operate on their child.

The condition, which affects one in over 16,000 newborns, is linked to severe intellectual disability and physical abnormalities in different parts of the body. It often causes individuals to experience heart defects or spinal cord abnormalities, as well as other complications such as a cleft lip, weak muscle tone and poorly developed eyes.

“Leane underwent four different surgeries on November 28 at Shaikh Khalifa Hospital, which included general anaesthesia. So we are all praying for the best,” Carbonell told Gulf News.

The surgeries include cleft palate procedure, polydactyly removal (an extra finger on her hand), fundoplication surgery to prevent stubborn heart burn, and peg tube surgery (percutaneous endoscopic gastrostomy) where a tube was passed into the baby’s stomach through the abdominal wall.

Baby Leane had previously gone under the knife — a pulmonary artery banding (PAB) surgical procedure to protect her lungs from irreversible damage in Thailand in June.

Corrective heart surgery

Her parents were told she has six months to undergo the total corrective heart surgery.

The Abu Dhabi residents received donations earlier this year, enabling Carbonell to take a short trip to Toronto, Canada where he presented his daughter’s case to doctors at ‘SickKids — The Hospital For Sick Children.’

The couple are hoping to have the financial means to take one more trip with their sick baby, with hopes of getting the surgery done before it’s too late.

“I have set up a garage sale where I sell second-hand items. We are also making customised passport holders and selling them for income at the moment,” he said.

However, the parents, who are fighting to keep their baby alive, are now facing another challenge.

Joel said that his wife, who worked in Abu Dhabi, has not been able to work for over a year-and-a-half due to her baby’s condition.

Mother facing jail

“She took out a loan that we were paying back through salary deduction, but with her not working, she has now been told by the court that she has to spend two months in jail,” he explained.

Facing difficult circumstances, the couple has also approached the Make a Wish foundation in the UAE with the hope of accelerating their child’s chance of surgery.

“This is a difficult time for us. Baby Leane has pulled through all the surgeries this week and is awake and still in an incubator. The next step is the corrective heart surgery,” said Carbonell.