I have sur­vived

A nine-year-old boy with the most un­likely of sur­vival sto­ries

Malta Independent - - FRONT PAGE - Gabriel Schem­bri

Xavier Mi­callef’s birth was un­likely, if not im­pos­si­ble. His chance of sur­vival prac­ti­cally nonex­is­tent. Yet, this nine-year-old boy from Mosta seems to have sur­passed all logic and science.

While his mother, Dorelle, was four months into her preg­nancy, the doc­tors told her that the child she was bear­ing in her womb would not make it through the whole preg­nancy. The months of preg­nancy passed and the doc­tors came in with more warn­ings. “He will prob­a­bly die once we cut the um­bil­i­cal cord. He is only sur­viv­ing be­cause of you.” De­spite all the odds, baby Xavier was born pre­ma­turely, but alive.

Xavier suf­fers from a very rare con­di­tion. The name is as com­plex as the con­di­tion it­self – Rhomben­cephalosy­nap­sis prog­no­sis, a con­di­tion as­so­ci­ated with brain mal­for­ma­tion.

“It’s a con­di­tion which lit­er­ally stops the brain from de­vel­op­ing. The back part of Xavier’s brain is in fact un­de­vel­oped,” she told The Malta In­de­pen­dent as Xavier was kept busy play­ing with his mother.

In Xavier’s case, this brain mal­for­ma­tion af­fected his bal­ance and mo­tor skills. The child can walk, but slightly im­bal­anced. Thanks to daily ex­er­cise and ther­apy, his move­ment

can im­prove.

“Doc­tors told me he would not sur­vive, but so far, we have en­joyed his pres­ence for more than nine years.”

The first in­di­ca­tions of the con­di­tions man­i­fested it­self when, still in the womb, the baby’s head started to grow ab­nor­mally. It ap­peared that the parts where the brain never de­vel­oped were in­stead get­ting filled up with wa­ter. This same wa­ter pres­ence in the head de­stroys parts of the brain and in some cases, can cause fa­cial de­for­ma­tion.

“We felt ter­ri­ble but some­how de­ter­mined to give life a chance. The doc­tors even told us of the op­tion to abort the preg­nancy abroad, but we didn’t want to. We de­cided to leave it in God’s hand if the baby is to sur­vive or not,” Dorselle says

Daily life for Dorselle and her hus­band changed com­pletely. They had to re­design their apart­ment to make room for the child’s ther­apy room and make ev­ery other part of the house adapt­able to Xavier’s con­di­tion. Kitchen tops are com­pletely bare and no loose items are left on the floor to avoid any ac­ci­dents just in case the child gets a tantrum, which are syn­ony­mous with the con­di­tion.

Dorselle has to stay at home as Xavier needs 24-hour su­per­vi­sion. Even at school, Xavier has the con­stant help of a Learn­ing Sup­port As­sis­tant.

“He goes to a spe­cial school and he en­joys it a lot. Some­times we have to deal with his be­havioural problems, but we’re cop­ing.”

Ev­ery year, Xavier’s family have to travel to the UK for a month packed with ther­apy. The cost for this yearly ex­er­cise, which started some three years ago, is be­tween €16,000 to €20,000. This ther­apy is vi­tal for Xavier’s de­vel­op­ment as they help him im­prove his mo­bil­ity skills, ver­bal com­mu­ni­ca­tion and mus­cle use. The Com­mu­nity Chest Fund helps out with the ex­penses re­lated to Xavier’s ther­apy.

The con­di­tion is so rare that doc­tors are still de­vel­op­ing more meth­ods and ex­er­cises to help pa­tients progress. Be­tween 1914 and 2014, there were only 50 peo­ple af­fected by the con­di­tion in the UK. Right now there are only around three re­ported cases of this con­di­tion in Europe.

De­spite all the challenges, the ther­apy is work­ing. “Be­fore, Xavier used to have up to five pills for anti-anx­i­ety. To­day, he’s liv­ing with­out them com­pletely.”

His mother’s con­cern now is his in­de­pen­dence and skills he needs to learn for the fu­ture. “We want him to be as in­de­pen­dent as pos­si­ble, one step at a time. We teach him how to make a sim­ple sand­wich. They might sound very ba­sic, but ev­ery step for­ward is progress for us.”

The Fun Run this Sun­day or­gan­ised by the Malta Com­mu­nity Chest Fund helps fam­i­lies like Xavier’s with their fi­nan­cial strug­gles to cope with the rare con­di­tion.

Photo: James Bianchi

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