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Wednesday 21 November 2018
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Help save Sheenece’s life

Parents of toddler with liver disease appeal to Health Minister

Sheldon and Lystra Jackson are seeking help for their 18-month-old daughter Sheenece who has a liver disease and urgently needs a transplant. PHOTOs BY ANSEL JEBODH
Sheldon and Lystra Jackson are seeking help for their 18-month-old daughter Sheenece who has a liver disease and urgently needs a transplant. PHOTOs BY ANSEL JEBODH

Time is running out for 18-month-old Sheenece Jackson who was born with the rare condition called Biliary Atresia. It is a childhood disease of the liver which affects one in every 30,000 children. The cause continues to baffle experts.

If Sheenece of Hard Bargain, Williamsville does not get an immediate liver transplant she would die. For the surgery to be successful it must be done before she reaches age two. Standing in the gap of Sheenece’s life or death is a decision made by the Children’s Life Fund to discontinue an arrangement it had with the ETHE Foundation of Argentina where between eight to ten children from TT had successful transplants done in the past.

Sheenece’s parents, Sheldon and Lystra Jackson, are appealing to Health Minister Terrence Deyalsingh to intervene and reverse the decision as the little girl does not have the luxury of time. Since her birth on March 9, 2017, Sheenece has had two liver biopsies, a gall bladder removed, three blood transfusions and numerous visits to the Wendy Fitzwilliam Paediatric Hospital, Eric Williams Medical Sciences Complex, Mt Hope for bringing up blood of the stomach as her condition puts other internal organs under strain.

In the last two months, she has been hospitalised four times. Because of her malfunctioning liver and its inability to remove impurities from her frail body, the entire mass of skin is covered with eczemas, which itches so intensely, that it wakes her up at all hours. Her mother explained a medication to be taken orally, which is only available from England, is used to bring temporary relief. No external medication helps.

Lystra expressed the hopelessness she feels having to see her only daughter in such distresses and unable to do anything.

She said last November an application was made to the fund for financial assistance to have the surgery done through its affiliate, the ETHE Foundation, as the procedure was not available locally.

While the process to get financing was taking place, Sheenece’s parents continued to liaise with Argentinian surgeon, Dr Carlos Luque, who had a history of success with local patients, as they searched for a compatible donor with Sheenece’s O blood type.

After almost one year such a donor could not be found and as the child’s condition deteriorated Luque offered to do an ABO incompatible transplant using a donor with a different blood type. Such a donor was found, 17 different tests were done, including psychiatric evaluation at the expense of the Jackson family. The donor was found to be compatible.

Lystra said they were ready to leave for Argentina once the funding was approved as Sheenece’s condition continues to deteriorate daily.

However, the situation changed about two weeks ago when Selma Valentine-Ramdin, the fund’s CEO, informed the Jacksons that the organisation no longer had an arrangement with the ETHE Foundation to send children abroad requiring this surgery. The foundation had been decertified by the fund because it did not have the requisite accreditation from the US-based Joint Commission International, a standards certification body that assessing health care.

Lystra said they were told the fund has engaged a new partner called Austrial, but Austrial does not do the incompatible transplant which means the Jacksons would have to go over the entire process to source another donor with the O blood type.

Deyalsingh said he was not yet aware of all the facts surrounding the matter. Valentine-Ramdhin said Sheenece’s case was complicated because she does not have a compatible donor. She said the authority is trying to find centres with the level of expertise to achieve the best possible outcome for Sheenece. At the same time, she also encouraged the Jacksons to continue their search for a compatible donor.

Donations to assist Sheenece can be made at First Citizens branches at Neo Account 2523650.

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