Boy constantly hungry due to rare disorder

By George Jones

A nine-year-old boy is "constantly starved" due to a rare disorder which means he never feels full - and needs FIVE meals a day.

Mark Allepuz-Rico was just three weeks old when his family were told the "devastating" news - that he suffers from Prader-Willi syndrome (PWS) in December 2015.

The rare genetic disorder, which affects an estimated one in 30,000 people worldwide, causes a wide range of physical symptoms, learning disabilities and behavioral challenges.

Typical signs of Prader-Willi syndrome include restricted growth, floppiness and an excessive appetite, which can easily lead to dangerous weight gain.

Despite Mark's five daily meals being served on time - breakfast at 7am, morning snack at 11am, lunch at 1pm on the dot, an afternoon snack at 4pm, and dinner at 7pm - the young lad is hungry 24/7.

His parents, Aga Cinari, and lawyer Marc Allepuz-Rico, 41, have accepted they will never be able to fulfil his hunger - and the only thing which is stopping him from becoming obese is their dedication to a carefully controlled diet.

Mom Aga, 46, a stay-at-home mom, from Aberdeenshire, Scotland, said: "He completely obsesses about food.

"When I found out the news, I just spent every waking minute googling everything about PWS and preparing for the worst because I had never heard of the disorder before.

"It was just the scariest thing ever.

"The time I should've spent enjoying my baby and making memories was spent going to different doctors and it never seemed to end.

"I couldn't enjoy life being a new mom."

Aga cares for Mark full-time and was "extremely excited" when she found out she was pregnant in February 2015.

During the pregnancy, she had "little suspicion" that anything was wrong, but would notice that "he didn't kick much" and that there was little movement.

In August that year, Aga went to the doctors privately to get an ultrasound scan and was told her baby "looked fine".

However, 41 weeks into her pregnancy, on November 19, 2015, Mark was born via c-section - two weeks later than expected - and she immediately noticed he wasn't making any noise and that he "felt extremely floppy".

"None of the doctors knew what was going on," Aga said.

"At first, they thought he might have had an infection and he was taken to ward after ward.

"He wasn't feeding well and wasn't crying and all I could think about was if he was healthy."

Mark was taken to the ICU and was under constant supervision with an NG tube as he struggled to feed.

One week after his birth, a genetician suspected he might have PWS - which was confirmed three weeks later after a genetic methylation test in December 2015.

"Looking back, he had quite distinctive features of the disorder when he came out," Aga said.

"He was very pale, had a lot of muscle mass and descended testes, which doctors explained were quite common.

"They gave me the details of what this would mean as he got older - and it was all very scary.

"The doctors said he would struggle to walk and talk and that he would be delayed in his growth, which could shorten his life.

"But one that stood out the most was the excessive appetite, which would get severe as he grew up, they warned."

During the first months of Mark's life, Aga explained she would need to set an alarm clock to feed him at night because he wouldn't cry and she couldn't breastfeed because he had weak muscle and a "poor suck".

To help manage the effects of PWS, the first-time mom made frequent visits with physiotherapists and speech therapists - and it wasn't until the late age of two when Mark started to walk - even now the boy still struggles with his l's and r's when speaking.

At the same time, Aga was also in contact with a dietician for when Mark started to express his hunger, which came at the age of three when his eating habits became a growing concern for his parents.

"He would always have an empty plate," Aga said.

"No matter what we fed him, he would eat it all.

"He never had an urge not to eat and it made us worry that it would be easy for him to gain weight, especially as his hunger would only get more severe."

Aga explained that when Mark went to parties or restaurants, his food would have to be physically removed to get him to stop because "he would eat everything".

And whenever people were eating food around the nine-year-old, it would be very rare for him not to ask for any.

However, despite his constant cravings, Mark is not obese and gets the necessary calories he needs for a boy his age (around 1,100 calories per day) - and Aga explained it is due to enforcing a "balanced diet and routine".

"Mark will only have five meals per day and nothing in between," she said.

"We would make sure he would get the calories he needs and we tend to prioritise high protein and high fat foods to subdue his hunger.

"He usually takes packed lunches to school, but if he has the dinners there, Mark would be offered smaller portions and would have fruit for pudding.

"At home, we avoid ultra-processed foods and lean towards more organic and higher-quality foods to maintain his weight as much as possible.

"But there is no cure and it's a disability for life," she added.

Mark meets with an endocrinologist every six months to keep track of his disorder, habits and growth, as well as frequent physio and swimming sessions to improve his mobility.

However, Aga is aware that there is no cure and that Mark's hunger will only get worse.

"We are not at the stage of locking up our cupboards and fridge doors - but at some point he will begin searching for food and it may be something we'll have to consider," she said.

"But for now, we are keeping our routine and he eats what he gets."