SASCHA WIL­SON

The par­ents of 18-month-old Sheenece Jack­son, who needs a life-sav­ing liv­er trans­plant, are plead­ing with Health Min­is­ter Ter­rance Deyals­ingh for help to save their daugh­ter’s life.

Par­ents Shel­don and Lystra Jack­son say they were told in Au­gust, af­ter be­ing in con­tact with the Chil­dren’s Life Fund Au­thor­i­ty, that the surgery could not be done at the Ar­genti­na med­ical in­sti­tu­tion, ETHE Foun­da­tion, be­cause the au­thor­i­ty has now sus­pend­ed its busi­ness with that in­sti­tu­tion.

Lystra said this de­vel­op­ment has pushed them back to square one while Sheenece’s life hangs in the bal­ance. Un­able to af­ford the surgery, which costs be­tween $1.1 and $1.3 mil­lion, the par­ents said they have no choice but de­pend on the Life Fund and the pub­lic for help.

Di­ag­nosed with cir­rho­sis of the liv­er from birth, Sheenece has had two liv­er biop­sies, surgery to re­move her gall­blad­der, three blood trans­fu­sions and she con­tin­ues to make nu­mer­ous vis­its at the Er­ic Williams Med­ical Sci­ences Com­plex in Mt Hope.

When gas­troen­terol­o­gist Dr Sher­man So­man told them she need­ed a liv­er trans­plant, the moth­er said they im­me­di­ate­ly con­tact­ed the Chil­dren’s Life Fund au­thor­i­ties and sub­mit­ted most of the doc­u­ments.

Af­ter nu­mer­ous un­suc­cess­ful at­tempts to find a suit­able donor with Sheenece’s O pos­i­tive blood type, she said the Foun­da­tion’s sur­geon, Dr Car­los Luque, who ex­am­ined Sheenece twice here in Trinidad, in­formed them that through a pro­ce­dure called ABO in­com­pat­i­bil­i­ty liv­er trans­plant, they would be able to use a donor who was in­com­pat­i­ble with Sheenece’s blood type.

How­ev­er, Lystra said for a suc­cess­ful trans­plant us­ing this pro­ce­dure the child must be un­der two years old. “They (Au­thor­i­ty) knew all of this. We kept them up to date on every­thing we were do­ing. We spent about rough­ly be­tween $10,000 and $15,000 to do all the tests of the donor,” she said.

The fi­nal doc­u­ments were even­tu­al­ly sub­mit­ted to the Life Fund au­thor­i­ties in Ju­ly.

Jack­son (L) said, “Sheenece suit­case is packed and wait­ing and now they telling us that they no longer us­ing that Foun­da­tion.”

The moth­er said their main is­sue with this is that it will be dif­fi­cult to find a new in­sti­tute that does the ABO in­com­pat­i­bil­i­ty liv­er trans­plant, which means they will have to start over the process, spend more mon­ey and this will take too much time.

“For us to have to go over the whole process is un­fair. The doc­tor says she does not have time be­cause her con­di­tion is de­te­ri­o­rat­ing dai­ly,” Lystra said

“I am beg­ging the Min­is­ter of the Health to in­ter­vene in this mat­ter im­me­di­ate­ly and save Sheenece’s life. Her clock is wind­ing down.”

Ex­press­ing his dis­sat­is­fac­tion with how they were treat­ed by the au­thor­i­ty, Shel­don said, “This is not a joke, my daugh­ter’s life is de­te­ri­o­rat­ing rapid­ly.”

Sheenece weighed 12 pounds at birth and she is on­ly two or three pounds heav­ier now. Her tum­my is swollen be­cause of flu­id which ac­cu­mu­lates, her eyes are yel­low and she has to take at least eight types of med­ica­tion dai­ly, her par­ent told the T&T Guardian. She al­so us­es a spe­cial milk which costs $300 and lasts a week.

Case com­pli­cat­ed—Fund CEO

In an email re­sponse to the is­sue, Chil­dren’s Life Fund CEO Sel­ma Valen­tine-Ramdin said Sheenece’s ap­pli­ca­tion was reg­is­tered in Ju­ly and be­ing processed.

“Sheenece’s case is more com­pli­cat­ed giv­en that she cur­rent­ly has an in­com­pat­i­ble donor. All the liv­er trans­plants that have been fund­ed to date have been with com­pat­i­ble donors and lo­cal ex­perts have in­di­cat­ed that Sheenece’s sit­u­a­tion is not the ide­al cir­cum­stance.

“The CLFA is as­sid­u­ous­ly try­ing to find cen­tres with the lev­el of ex­per­tise to achieve the best pos­si­ble out­come for this ba­by. The par­ents are al­so be­ing en­cour­aged to con­tin­ue their ef­forts in seek­ing a com­pat­i­ble donor.” Valen­tine-Ramdin made no men­tion about the Ar­genti­na med­ical in­sti­tute in her re­sponse.

When con­tact­ed about Sheenece’s case and the Ar­genti­na med­ical in­sti­tute, Health Min­is­ter Ter­rance Deyals­ingh said was yet to get the facts in both mat­ters and so could not make a state­ment. He di­rect­ed the T&T Guardian’s ques­tions to the head of the au­thor­i­ty.

Any­one will­ing to make do­na­tions to help Sheenece can do so through First Cit­i­zens Neo Ac­count #2523650 or con­tact her moth­er at 342-2710 or 708-5053 or fa­ther at 751-4480.