Boy with rare liver disease seeks help for surgery

RAD­HI­CA DE SIL­VA

Se­nior Mul­ti­me­dia Re­porter

rad­hi­[email protected]

Eleven-year-old Aaron Ed­wards longs for a chance at life. He’s not been in school for two years, as a rare liv­er dis­or­der has left him too weak to live a nor­mal child­hood.

But while oth­er sick chil­dren are cov­ered by the Chil­dren’s Life Fund for treat­ments abroad, his moth­er Neeru­pa Ed­wards says Aaron is too weak to trav­el and lo­cal­ly, there is no doc­tor able to per­form the surgery.

Speak­ing to Guardian Me­dia, Ed­wards said she lives in Prime Min­is­ter Kam­la Per­sad-Bisses­sar’s con­stituen­cy along Pe­nal Rock Road. She said every day, she lives with the con­stant fear that the swollen veins in Aaron’s body could rup­ture with­out warn­ing, caus­ing him to vom­it blood. It hap­pened sev­er­al times in the past, and Ed­wards said the hor­ror of see­ing this has made her sick with wor­ry.

“The first time he vom­it­ed blood, I didn’t know what was hap­pen­ing,” she re­called.

“You don’t know what to ex­pect. When you see your child bring­ing up blood like that, it’s fright­en­ing. You feel help­less.”

This is why she spends every hour at his side, al­though she is forced to watch help­less­ly as his ab­domen stretch­es with flu­id be­cause blood can no longer drain prop­er­ly from his liv­er.

“He used to be the life of every­thing,” she said.

“He was al­ways run­ning, al­ways play­ing, al­ways try­ing to fix some­thing. Now he has no en­er­gy. He has no ap­petite. He’s al­ways tired.”

She said in 2024, Aaron was di­ag­nosed with Budd-Chiari Syn­drome, a rare con­di­tion in which the veins re­spon­si­ble for drain­ing blood from the liv­er be­come blocked.

A med­ical re­port states the ob­struc­tion has caused se­vere por­tal hy­per­ten­sion, en­large­ment of both his liv­er and spleen, re­peat­ed flu­id ac­cu­mu­la­tion in Aaron’s ab­domen, and dan­ger­ous­ly en­larged veins in his oe­soph­a­gus and stom­ach that have bled sev­er­al times.

His lat­est dis­charge sum­ma­ry from the San Fer­nan­do Gen­er­al Hos­pi­tal shows he was ad­mit­ted af­ter a ma­jor up­per gas­troin­testi­nal bleed, dur­ing which time he vom­it­ed blood re­peat­ed­ly and passed black stools.

Ed­wards said spe­cial­ists at the Er­ic Williams Med­ical Sci­ences Com­plex in Mt Hope have since con­firmed he ur­gent­ly re­quires a Tran­sjugu­lar In­tra­hep­at­ic Por­tosys­temic Shunt (TIPS) pro­ce­dure to re­duce the pres­sure in his liv­er, pre­vent fur­ther bleed­ing, con­trol the flu­id build-up and slow the pro­gres­sion of his liv­er dis­ease.

The high­ly spe­cialised pro­ce­dure is not avail­able with­in Trinidad and To­ba­go’s pae­di­atric health sys­tem, Ed­wards added.

Un­will­ing to lose her son, Ed­wards said Aaron’s case has been re­viewed by an in­ter­na­tion­al team, and a spe­cial­ist from Ar­genti­na is pre­pared to per­form the op­er­a­tion at the Er­ic Williams Med­ical Sci­ences Com­plex if the funds can be se­cured. The pro­ce­dure car­ries a quot­ed cost of US$33,000.

She said be­fore doc­tors dis­cov­ered the cause of his ill­ness, Aaron’s ab­domen had swollen dra­mat­i­cal­ly, with al­most five litres of flu­id trapped in­side. The flu­id had to be drained through a nee­dle in­sert­ed in­to his ab­domen.

His old­er sis­ters, An­gel and Vic­to­ria, al­so begged for as­sis­tance to help him.

“To live through some­thing like this with your own broth­er ... the emo­tions are over­whelm­ing. It’s de­press­ing. It’s stress­ful. All I want is for him to have a long, healthy, peace­ful life with­out doc­tors around him all the time,” An­gel said.

She said the fam­i­ly’s sav­ings dis­ap­peared long ago un­der the weight of trans­porta­tion costs, med­ical tests and every­day ex­pens­es. Their fa­ther, Ryan Ed­wards, died in 2021 from a sud­den ail­ment, and fi­nances have been tight since then.

“Fam­i­ly help where they can by buy­ing gro­ceries, pay­ing util­i­ty bills or drop­ping off meals, but the cost of Aaron’s surgery is be­yond our reach,” An­gel said.

Mak­ing the sit­u­a­tion even more dif­fi­cult, Ed­wards said, the Chil­dren’s Life Fund can­not fi­nance Aaron’s treat­ment be­cause the pro­gramme sup­ports life-threat­en­ing con­di­tions re­quir­ing over­seas med­ical care. Aaron is too med­ical­ly frag­ile to trav­el abroad, leav­ing the fam­i­ly to raise the mon­ey need­ed to bring the spe­cial­ist to Trinidad in­stead.

She has ap­proached char­i­ties, or­gan­i­sa­tions and the Prime Min­is­ter’s con­stituen­cy of­fice seek­ing as­sis­tance, but says time is run­ning out.

“The spe­cial­ist want­ed to do the pro­ce­dure with­in a month,” she said.

“That month has al­ready passed. Every­where we go, they tell us six to eight weeks or three to four months be­fore they can get back to us. We don’t have that kind of time.”

Both Prime Min­is­ter Per­sad-Bisses­sar and Health Min­is­ter Dr Lack­ram Bo­doe have since reached out to the fam­i­ly.

Any­one want­i­ng to as­sist can do­nate to Re­pub­lic Bank Sav­ings Ac­count 500 040 338 131 at the Pe­nal Branch or call An­gel (868) 365-7405 or Ed­wards at (868) 490-5189. A Go­FundMe ac­count can be reached at https://go­fund.me/e567ac2e8