Life-Long Abdominal Tube-Feeding For 5-Year-Old With Congenital Glycosylation T2 Disorder

Five-year-old Keaton Foale faces long-standing problem of ever being able to eat as he is ailing from a 1 in a 135 million genetic disorder. The boy has yet not experienced what the taste of chips or sweets and is most probably would never be able to as he has been detected with the extremely atypical inborn disorder known as Glycosylation Type Two. Due to this condition normal eating is not possible in his case. The feeding is done via a tube that is goes directly into his stomach – something that he would need to live with for all his life.

His condition has perplexed doctors globally and was initially detected when he started declining bottle feeds when he was 3 months old.

Doctors from thcongenital glycosylation disordere Sutherland General Hospital found that his stomach instantaneously eliminated any form of food. The boy’s stomach was stapled at a tender age of 6 months for saving his life.

As a substitute, a specialised feeding tube directly delivering dense calorie milk blend was put in his stomach that was given 4 times every day, with each session lasting for fifty minutes.

Claire Plummer, the mother of the boy turned frenetic with anxiety following her son initially developing the atypical symptoms.

Claire, the twenty-nine-year-old mother of the boy, his ten-year-old sister, Bethany and his 8-year-old brother Dylan say that there is dearth of any kind of knowledge regarding Keaton’s atypical genetic condition.

Claire explicated that as Keaton’s weight dropped drastically, nasal tube feeding was started on him by the doctors, however that too failed to halt his puking.

With matters going out of hand, some method had to be devised to provide Keaton the much required nutrition due to which the doctors took the drastic step of direct insertion of the feeding tube into his stomach.

When being scanned under the X-ray food apparatus for evaluating the reasons why he could not eat, the doctors were bewildered. The milk has just got lodged in his throat that he failed to gulp in. The small amount of milk droplets that managed to go down his throat either landed in the stomach making him puke or winded up in his lungs.

The doctors failed to detect his condition for years and even presently after deciphering his rare condition has not helped much either. There are merely selective few doctors globally who actually handle CDG as it is an extremely rare condition.

Glycosylation Type Two is a genetic, non-heritable disorder and could lead to a host of niggling symptoms inclusive of cancer and going deaf.

Unable to eat, Keaton additionally ails from internal blood loss regularly and sheds quite a few pints of blood annually at times bleeding twice or thrice weekly.

Keaton was born prematurely at twenty-four weeks and was merely 4 inches in height during delivery, though the doctors consider this had no effect on him contracting this disorder.

During the foremost year of his life, he’s had jaundice, been anaemic, had blood infections and even underwent a laser ocular surgery for stopping him from losing his eyesight.

It was only when he was three and a half years old that his condition was eventually detected after several years of testing and difficulties. The life span of those ailing lasts between three months to sixty years.

Presently, it is a struggle for him to climb and descend steps on his own and has speech problems.

Presently, there is no cure in sight for this condition and research is still in progress.

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