Young Caden’s bat­tle to stay alive

Pretoria News Weekend - - NEWS - SAMEER NAIK

ZOLA Ben­jamin ad­mits she doesn’t know how much longer her son Caden will be alive.

“At the mo­ment he’s not do­ing too well,” said a tear­ful Zola.

“The doc­tors have said that his con­di­tion has wors­ened and his weight has gone up con­sid­er­ably.”

The 10-year-old, who lives in Standerton in Mpumalanga, suf­fers from a rare ge­netic disor­der called Prader-Willi syn­drome which re­sults in a con­stant sense of hunger.

His con­di­tion has made it dif­fi­cult for Caden, who weighs a stag­ger­ing 90kg, to make friends and live a healthy, ac­tive life.

Caden is hun­gry all the time and is never sat­is­fied.

This is be­cause his brain doesn’t re­ceive the sig­nal that he’s full, forc­ing him to eat any­thing he can find.

Not un­com­mon with this con­di­tion is the de­sire to eat non-edi­ble items to curb his hunger, which in­tro­duces a num­ber of com­pli­ca­tions to his body.

He also has dif­fi­culty breath­ing be­cause he is obese. When he was 3, doc­tors in­serted a tra­cheostomy tube.

His con­di­tion has also af­fected his in­tel­lec­tual abil­ity. At the age of 10, he has been un­able to at­tend school and can’t read.

“Things aren’t get­ting any eas­ier for my Caden,” said Zola. “Each day I’m con­fronted with the like­li­hood that he won’t make it, but I try to re­main hope­ful al­ways.

“As a mother there is noth­ing more heart­break­ing than see­ing your own child suf­fer the way that Caden is. His health is slowly de­te­ri­o­rat­ing and it’s not look­ing good at all.”

Caden lives with his mom, grand­mother and two cousins in a tiny flat in Standerton.

She was forced to give up her job – she was in­volved with a sec­ond­hand cloth­ing busi­ness – to pro­vide her son with the 24-hour care he needs. Caden’s spe­cialised med­i­cal re­quire­ments have also caused an enor­mous strain for the fam­ily as he has to travel to the Steve Biko Hos­pi­tal in Pre­to­ria three times a month to see a spe­cial­ist.

In the last month, the boy has been ad­mit­ted to hos­pi­tal sev­eral times as his con­di­tion con­tin­ues to de­te­ri­o­rate by the day.

“He went in for an op­er­a­tion last week Wed­nes­day where they fit­ted a new tra­cheostomy. How­ever the new (de­vice) is not the right one, and he’s now lost the abil­ity to speak,” says Zola.

Caden’s mom says he’s now also been un­able to eat any solids due to the de­te­ri­o­ra­tion in his health.

“He hasn’t eaten solid foods for a while.

“Now he only has liq­uids like Pow­er­ade. He is suf­fer­ing.”

“The doc­tors have done all they can. They said we should make him com­fort­able at home.”

Zola has also had to deal with Caden’s med­i­cal bills which have been pil­ing up. “We are re­ally strug­gling fi­nan­cially. I am all by my­self and so I bat­tle to pay all his med­i­cal ex­penses.”

Last week, a crowd­fund­ing cam­paign was set up by fam­ily friend Gila Sacks through do­na­tions-based crowd­fund­ing plat­form Back­aBuddy.

The Ben­jamins are hop­ing to raise R150 000 to pay for the med­i­cal ex­penses

“I was lucky enough to meet this charm­ing young man in Fe­bru­ary,” said Sacks. “This is the road that has led me to crowd­fund­ing on Back­aBuddy. “I hope Caden’s story moves you. “To­gether we can give him a fight­ing chance,” added Sacks.

To sup­port Caden’s cam­paign visit https://www.back­abuddy. co.za/cham­pion/project/for-caden

Ten-year-old Caden Ben­jamin suf­fers from a rare ge­netic disor­der called Prader-Willi syn­drome which re­sults in a con­stant sense of hunger. The rare, in­cur­able disor­der af­fects about 20 000 peo­ple world­wide and re­sults in phys­i­cal, men­tal and be­havioural prob­lems.

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