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data-rh="true">The children at risk of eating themselves to death - BBC News</title><meta data-rh="true" name="description" content=""One sweet here, another one there - that could kill him," says a man whose son has Prader-Willi syndrome."/><meta data-rh="true" name="theme-color" content="#FFFFFF"/><meta data-rh="true" property="article:author" content="https://www.facebook.com/bbcnews"/><meta data-rh="true" property="article:section" content="Health"/><meta data-rh="true" property="fb:admins" content="100004154058350"/><meta data-rh="true" property="fb:app_id" content="1609039196070050"/><meta data-rh="true" property="fb:pages" 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data-emotion-css="1c1994u-StyledHeading">.css-1c1994u-StyledHeading{font-family:ReithSerif,Helvetica,Arial,freesans,sans-serif;font-weight:500;font-size:2rem;line-height:2.25rem;color:#3F3F42;}@media (min-width:37.5rem){.css-1c1994u-StyledHeading{font-size:2.75rem;line-height:3rem;}}.css-1c1994u-StyledHeading:focus{outline-style:none;}.css-1c1994u-StyledHeading:focus-visible{outline-style:auto;}</style><h1 tabindex="-1" id="main-heading" class="css-1c1994u-StyledHeading e1fj1fc10">The children at risk of eating themselves to death</h1><style data-emotion-css="15hnagr-Contributor">.css-15hnagr-Contributor{font-family:ReithSans,Helvetica,Arial,freesans,sans-serif;font-weight:400;font-size:0.8125rem;line-height:1rem;display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-align-items:center;-webkit-box-align:center;-ms-flex-align:center;align-items:center;color:#696969;}.css-15hnagr-Contributor strong{font-family:ReithSerif,Helvetica,Arial,freesans,sans-serif;font-weight:500;color:#3F3F42;}</style><p class="css-15hnagr-Contributor e5xb54n0"><span><strong>By Will Grant</strong><br/>Cuba correspondent, BBC News</span></p><div><style data-emotion-css="11c8au8-MetadataStrip">.css-11c8au8-MetadataStrip{font-family:ReithSans,Helvetica,Arial,freesans,sans-serif;font-weight:400;font-size:0.8125rem;line-height:1rem;margin-top:-0.25rem;color:#696969;}</style><dl class="css-11c8au8-MetadataStrip e1ojgjhb0"><style data-emotion-css="8d0yke-MetadataStripItem">.css-8d0yke-MetadataStripItem{display:inline-block;white-space:nowrap;margin-top:0.25rem;max-width:calc(100% - 1em);}.css-8d0yke-MetadataStripItem::after{content:'';display:inline-block;height:1.25em;border-left:#BABABA 1px solid;margin:0 0.5em;vertical-align:-0.25em;}.css-8d0yke-MetadataStripItem:last-child{max-width:100%;}.css-8d0yke-MetadataStripItem:last-child::after{content:none;}</style><div class="css-8d0yke-MetadataStripItem e1ojgjhb1"><dt class="css-178wc68-VisuallyHidden e1y6uwnp0">Published</dt><style data-emotion-css="1n98t8y-MetadataContent">.css-1n98t8y-MetadataContent{display:inline-block;max-width:100%;}</style><dd class="css-1n98t8y-MetadataContent e1ojgjhb2"><style data-emotion-css="1hizfh0-MetadataSnippet">.css-1hizfh0-MetadataSnippet{display:inline-block;max-width:100%;overflow:hidden;text-overflow:ellipsis;white-space:nowrap;vertical-align:bottom;}</style><span class="css-1hizfh0-MetadataSnippet ecn1o5v0"><style data-emotion-css="1n712b9-IconContainer">.css-1n712b9-IconContainer{display:inline-block;width:1em;height:1em;vertical-align:-0.125em;padding-right:0.25em;}</style><span class="css-1n712b9-IconContainer ecn1o5v2"><svg width="1em" height="1em" viewbox="0 0 32 32" class="css-47d2zd-StyledIcon e6m7o990" focusable="false" aria-hidden="true"><title>duration</title><path d="M17 15.4V6h-2v10.6l8.8 5.1 1-1.8-7.8-4.5z"></path><path d="M16 4A12 12 0 1 1 4 16 12 12 0 0 1 16 4m0-4a16 16 0 1 0 16 16A16 16 0 0 0 16 0z"></path></svg></span><span aria-hidden="false"><time datetime="2019-12-26T00:14:15.000Z">26 December 2019</time></span></span></dd></div></dl></div><style data-emotion-css="1kpdaxb-TagShareWrapper">.css-1kpdaxb-TagShareWrapper{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;}.css-1kpdaxb-TagShareWrapper > *:not([hidden]):not(style) ~ *:not([hidden]):not(style){margin-left:0.5rem;}</style><div class="css-1kpdaxb-TagShareWrapper e1nh2i2l6"><style data-emotion-css="1ynay8h-StyledInformationPanel">.css-1ynay8h-StyledInformationPanel{display:inline-block;}html.no-js .css-1ynay8h-StyledInformationPanel{display:none;}</style><div class="css-1ynay8h-StyledInformationPanel e15ad6a60"><div><style data-emotion-css="okw2be-Button-StandardButton">.css-okw2be-Button-StandardButton{font-family:ReithSans,Helvetica,Arial,freesans,sans-serif;font-weight:700;font-size:1rem;line-height:1.25rem;display:block;padding:0 calc(1rem - 1px);border:1px solid 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data-component="image-block" class="css-vk3nhx-ComponentWrapper e1xue1i80"><style data-emotion-css="1759m9z-StyledFigure">.css-1759m9z-StyledFigure{font-family:ReithSans,Helvetica,Arial,freesans,sans-serif;font-weight:400;font-size:0.875rem;line-height:1.125rem;}</style><figure class="css-1759m9z-StyledFigure e34k3c20"><style data-emotion-css="kwaqyc-StyledFigureContainer">.css-kwaqyc-StyledFigureContainer{position:relative;}</style><div class="css-kwaqyc-StyledFigureContainer e34k3c22"><style data-emotion-css="1xtcmof-Placeholder">.css-1xtcmof-Placeholder{position:relative;display:block;padding-bottom:56.25%;background-color:#EEEEEE;}.css-1xtcmof-Placeholder img{overflow:hidden;position:absolute;top:0;right:0;bottom:0;left:0;display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-box-pack:center;-webkit-justify-content:center;-ms-flex-pack:center;justify-content:center;-webkit-align-items:center;-webkit-box-align:center;-ms-flex-align:center;align-items:center;width:100%;height:100%;object-fit:cover;}</style><span class="css-1xtcmof-Placeholder e16icw910"><span><noscript><style data-emotion-css="evoj7m-Image">.css-evoj7m-Image{display:block;width:100%;height:auto;}</style><img alt="Hector and his son Christian" srcset="https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/240/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 240w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/320/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 320w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/480/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 480w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/624/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 624w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/800/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 800w" src="https://web.archive.org/web/20201128153421im_/https://c.files.bbci.co.uk/F97D/production/_110196836_picture31-2.jpg" width="976" height="549" loading="lazy" class="css-evoj7m-Image ee0ct7c0"/></noscript></span></span></div><style data-emotion-css="1rnnz6t-StyledFigureCaption">.css-1rnnz6t-StyledFigureCaption{background:#3F3F42;color:#EEEEEE;padding:1rem;}</style><figcaption class="css-1rnnz6t-StyledFigureCaption e34k3c21"><span class="css-178wc68-VisuallyHidden e1y6uwnp0">image caption</span>Hector and Christian</figcaption></figure></div><style data-emotion-css="uf6wea-RichTextComponentWrapper">.css-uf6wea-RichTextComponentWrapper{margin:1rem 0;max-width:36.25rem;}</style><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><style data-emotion-css="83cqas-RichTextContainer">.css-83cqas-RichTextContainer{color:#3F3F42;}.css-83cqas-RichTextContainer > *:not([hidden]):not(style) ~ *:not([hidden]):not(style){margin-top:1rem;}</style><div class="css-83cqas-RichTextContainer e5tfeyi2"><p><style data-emotion-css="14iz86j-BoldText">.css-14iz86j-BoldText{font-weight:bold;}</style><b class="css-14iz86j-BoldText e5tfeyi0">The fridge in Hector Fernandez's home is under lock and key.</b></p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>The door to the kitchen, which is specially fitted, is also locked. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>So are the cupboards and the medicine cabinet. Anywhere that contains anything remotely edible is guarded and the keys hidden under Hector's pillow at night. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>It's not that Hector is paranoid about thieves. It's because his son has the incurable genetic condition Prader-Willi syndrome. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Patients with the syndrome - named after the two researchers who discovered it in 1956 - suffer from an unrelenting, insatiable hunger. </p></div></div><style data-emotion-css="mysbf6-ComponentWrapper-CrossheadComponentWrapper">.css-mysbf6-ComponentWrapper-CrossheadComponentWrapper{margin:1.5rem 0;max-width:50rem;padding-top:1rem;max-width:36.25rem;}</style><div data-component="crosshead-block" class="css-mysbf6-ComponentWrapper-CrossheadComponentWrapper e1xue1i84"><style data-emotion-css="1jlqpzd-StyledHeading">.css-1jlqpzd-StyledHeading{font-family:ReithSerif,Helvetica,Arial,freesans,sans-serif;font-weight:500;font-size:1.5rem;line-height:1.75rem;color:#3F3F42;}@media (min-width:37.5rem){.css-1jlqpzd-StyledHeading{font-size:2rem;line-height:2.25rem;}}.css-1jlqpzd-StyledHeading:focus{outline-style:none;}.css-1jlqpzd-StyledHeading:focus-visible{outline-style:auto;}</style><h2 class="css-1jlqpzd-StyledHeading e1fj1fc10">Always hungry</h2></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Hector says that if unsupervised, his 18-year-old son, Christian, could, in effect, eat himself to death.</p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"The stories I could tell," reflects Hector. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"Eating dog food from the bowl, going through the rubbish, emptying an entire tube of toothpaste into his mouth. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"For him, it's all food…" he trails off as Christian interrupts to say he's hungry. Hector gives him a single slice of pineapple, pre-cut to ensure he has no more than his required sugar intake for the morning.</p></div></div><style data-emotion-css="18mjolk-ComponentWrapper">.css-18mjolk-ComponentWrapper{margin:1.5rem 0;max-width:50rem;}</style><div data-component="image-block" class="css-18mjolk-ComponentWrapper e1xue1i80"><figure class="css-1759m9z-StyledFigure e34k3c20"><div class="css-kwaqyc-StyledFigureContainer e34k3c22"><span class="css-1xtcmof-Placeholder e16icw910"><span><noscript><img alt="Christian eating" srcset="https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/240/cpsprodpb/6125/production/_110196842_picture41-2.jpg 240w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/320/cpsprodpb/6125/production/_110196842_picture41-2.jpg 320w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/480/cpsprodpb/6125/production/_110196842_picture41-2.jpg 480w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/624/cpsprodpb/6125/production/_110196842_picture41-2.jpg 624w, https://web.archive.org/web/20201128153421im_/https://ichef.bbci.co.uk/news/800/cpsprodpb/6125/production/_110196842_picture41-2.jpg 800w" src="https://web.archive.org/web/20201128153421im_/https://c.files.bbci.co.uk/6125/production/_110196842_picture41-2.jpg" width="976" height="549" loading="lazy" class="css-evoj7m-Image ee0ct7c0"/></noscript></span></span></div></figure></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Prader-Willi, which comes from a deletion or repetition in Chromosome 15, has a devastating effect on patients and their families. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>As well as often suffering from obesity and diabetes which shortens their life expectancy, children with the condition have mental development issues and behavioural problems. </p></div></div><div data-component="unordered-list-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><style data-emotion-css="1pzprxn-BulletListContainer">.css-1pzprxn-BulletListContainer{margin-left:1.5rem;}.css-1pzprxn-BulletListContainer *:not([hidden]):not(style) ~ *:not([hidden]):not(style){margin-top:1rem;}.css-1pzprxn-BulletListContainer ul{list-style-type:disc;}.css-1pzprxn-BulletListContainer ol{list-style-type:decimal;}</style><div class="css-1pzprxn-BulletListContainer e5tfeyi3"><ul role="list"><li><style data-emotion-css="yidnqd-InlineLink">.css-yidnqd-InlineLink:link{color:#3F3F42;}.css-yidnqd-InlineLink:visited{color:#696969;}.css-yidnqd-InlineLink:link,.css-yidnqd-InlineLink:visited{font-weight:bolder;border-bottom:1px solid #BABABA;-webkit-text-decoration:none;text-decoration:none;}.css-yidnqd-InlineLink:link:hover,.css-yidnqd-InlineLink:visited:hover,.css-yidnqd-InlineLink:link:focus,.css-yidnqd-InlineLink:visited:focus{border-bottom-color:currentcolor;border-bottom-width:2px;color:#B80000;}@supports (text-underline-offset:0.25em){.css-yidnqd-InlineLink:link,.css-yidnqd-InlineLink:visited{border-bottom:none;-webkit-text-decoration:underline #BABABA;text-decoration:underline #BABABA;-webkit-text-decoration-thickness:1px;text-decoration-thickness:1px;-webkit-text-decoration-skip-ink:none;text-decoration-skip-ink:none;text-underline-offset:0.25em;}.css-yidnqd-InlineLink:link:hover,.css-yidnqd-InlineLink:visited:hover,.css-yidnqd-InlineLink:link:focus,.css-yidnqd-InlineLink:visited:focus{-webkit-text-decoration-color:currentcolor;text-decoration-color:currentcolor;-webkit-text-decoration-thickness:2px;text-decoration-thickness:2px;color:#B80000;}}</style><a href="https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/health-41599455/the-girl-who-s-always-hungry" class="css-yidnqd-InlineLink e1no5rhv0">The girl who is always hungry</a></li><li><a href="https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/uk-47146784/katie-price-tells-of-struggles-caring-for-disabled-son-harvey" class="css-yidnqd-InlineLink e1no5rhv0">Katie Price tells of struggles caring for disabled son Harvey</a></li></ul></div></div></div><div data-component="crosshead-block" class="css-mysbf6-ComponentWrapper-CrossheadComponentWrapper e1xue1i84"><h2 class="css-1jlqpzd-StyledHeading e1fj1fc10">Rare illness</h2></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Christian is a good-natured man but can fly into violent rages if denied access to the food he wants. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"It's like a category five hurricane, flattening anything in its path," his father says, showing me a disturbing video of a recent violent episode. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>His parents even resorted to tying Christian to a padded chair to prevent him from self-harming or hurting his care-givers. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"I just take things one day at a time," says Hector, unable to hold back the tears. "I don't know what will happen to him after I'm gone," a common concern for the parents of Prader-Willi children. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Dealing with the complications of the disease are especially tough in Cuba. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Hector tries to feed his son a macrobiotic diet to keep his weight and blood sugar in check. However, it's hard to find the right food and medicines on an island crippled by a decades-long US economic embargo and years of economic mismanagement by the state. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Although the Cuban government lauds its healthcare system, it is suffering from a chronic lack of investment and Hector says doctors in Cuba have next to no experience with treating Prader-Willi. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"Being a rare illness, there are very few doctors in the country who have ever seen any patients with it," he explains. "They might have seen one case in 20 years and then never have seen another. There is no specialist here."</p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>He says patients should be seen by a range of specialists with an understanding of Prader-Willi, from nutritionists and dietitians to psychiatrists and physiotherapists. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Still, things are beginning to change. </p></div></div><div data-component="crosshead-block" class="css-mysbf6-ComponentWrapper-CrossheadComponentWrapper e1xue1i84"><h2 class="css-1jlqpzd-StyledHeading e1fj1fc10">Getting help</h2></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Last month, Cuba hosted the tenth international Prader-Willi conference. The forum brought together researchers, clinicians, patients and their families under one roof to share their experiences. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>It is an invaluable opportunity, says president of the International Prader-Willi Organisation, Prof Tony Holland: "The most important aspect is to get families, scientists and care-givers - some from countries that have very good services, some that have very poor services or no services - to learn from each other." </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>The intention is that people can then "argue for better services, can argue for the right treatments for their children" when they go home, he says. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>As emeritus professor of psychiatry at Cambridge University, Prof Holland has had years of involvement with Prader-Willi syndrome and has seen the state of care of the condition in many parts of the world. Despite the huge advances still needed in Cuba, he believes there are some encouraging signs:</p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"Cuba now has the ability in their health service to do the genetic diagnosis. Their doctors are beginning to recognise Prader-Willi syndrome, there is a community of families of people with Prader-Willi syndrome, and that is really important."</p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>That coincides with Hector's experience. In 2010, affected parents held their first national meeting. Only six turned up. Today, there are more than 100 Cuban families identified with the disease and, thanks to improvements in internet access in Cuba, they are in constant touch.</p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>Hector serves up a plate of raw vegetables and a wholewheat rice cake for Christian's lunch. Even finding rice cakes is a struggle in Cuba. But Hector is now familiar at dealing with the needs of a Prader-Willi sufferer on a Communist-run island. He's even started to teach other people in his neighbourhood about the disease. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>He explains to them that Christian is not just a little chubby and mentally undeveloped - but at mortal risk, every day. </p></div></div><div data-component="text-block" class="css-uf6wea-RichTextComponentWrapper e1xue1i83"><div class="css-83cqas-RichTextContainer e5tfeyi2"><p>"There's a tendency here to reward kids for being good with candies," he observes. 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that could kill him,\" says a man whose son has Prader-Willi syndrome.","lastUpdated":1605699746829,"firstPublished":1577319255000,"lastPublished":1577319255000,"timestamp":1577319255000,"analytics":{"page":{"name":"news.health.story.50816048.page","contentId":"urn:bbc:cps:8f249aa5-1ed1-fa46-9c7c-f0ed5d4268c7","section":"health","producer":"NEWS","additionalProperties":{"custom_var_1":"2019-12-26T00:14:15.000Z","custom_var_2":"2019-12-26T00:14:15.000Z"}}},"indexImage":{"alt":"Hector and his son Christian","src":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/1024/branded_news/16EAD/production/_110196839_picture31-2.jpg","width":976,"height":549},"section":{"name":"Health","uri":"/news/health"},"site":{"name":"BBC News","uri":"/news"},"timestampRelative":"26 December 2019","publishedDateTime":"2019-12-26T00:14:15.000Z","translations":{"seeAlsos":"More on this story","tagList":"Related Topics","socialEmbed":{"instagram":{"warningText":null,"linkText":null},"facebook":{"warningText":"The BBC is not responsible for the content of external sites.","linkText":"View original post on Facebook"},"twitter":{"warningText":"The BBC is not responsible for the content of external sites.","linkText":"View original tweet on Twitter"},"youtube":{"warningText":"Warning: Third party content may contain adverts","linkText":null}}}},"headline":"The children at risk of eating themselves to death","contributor":{"title":"By Will Grant","subtitle":"Cuba correspondent, BBC News"},"blocks":[{"type":"image","model":{"emphasiseImage":true,"caption":"Hector and Christian","media":{"__typename":"ComponentsImage","src":"https://web.archive.org/web/20201128153421/https://c.files.bbci.co.uk/F97D/production/_110196836_picture31-2.jpg","srcSet":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/240/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 240w, https://ichef.bbci.co.uk/news/320/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 320w, https://ichef.bbci.co.uk/news/480/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 480w, https://ichef.bbci.co.uk/news/624/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 624w, https://ichef.bbci.co.uk/news/800/cpsprodpb/F97D/production/_110196836_picture31-2.jpg 800w","height":549,"width":976,"alt":"Hector and his son Christian","loading":"lazy"}}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"The fridge in Hector Fernandez's home is under lock and key.","blocks":[{"type":"fragment","model":{"text":"The fridge in Hector Fernandez's home is under lock and key.","attributes":["bold"]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"The door to the kitchen, which is specially fitted, is also locked. ","blocks":[{"type":"fragment","model":{"text":"The door to the kitchen, which is specially fitted, is also locked. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"So are the cupboards and the medicine cabinet. Anywhere that contains anything remotely edible is guarded and the keys hidden under Hector's pillow at night. ","blocks":[{"type":"fragment","model":{"text":"So are the cupboards and the medicine cabinet. Anywhere that contains anything remotely edible is guarded and the keys hidden under Hector's pillow at night. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"It's not that Hector is paranoid about thieves. It's because his son has the incurable genetic condition Prader-Willi syndrome. ","blocks":[{"type":"fragment","model":{"text":"It's not that Hector is paranoid about thieves. It's because his son has the incurable genetic condition Prader-Willi syndrome. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Patients with the syndrome - named after the two researchers who discovered it in 1956 - suffer from an unrelenting, insatiable hunger. ","blocks":[{"type":"fragment","model":{"text":"Patients with the syndrome - named after the two researchers who discovered it in 1956 - suffer from an unrelenting, insatiable hunger. ","attributes":[]}}]}}]}},{"type":"crosshead","text":"Always hungry"},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Hector says that if unsupervised, his 18-year-old son, Christian, could, in effect, eat himself to death.","blocks":[{"type":"fragment","model":{"text":"Hector says that if unsupervised, his 18-year-old son, Christian, could, in effect, eat himself to death.","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"The stories I could tell,\" reflects Hector. ","blocks":[{"type":"fragment","model":{"text":"\"The stories I could tell,\" reflects Hector. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"Eating dog food from the bowl, going through the rubbish, emptying an entire tube of toothpaste into his mouth. ","blocks":[{"type":"fragment","model":{"text":"\"Eating dog food from the bowl, going through the rubbish, emptying an entire tube of toothpaste into his mouth. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"For him, it's all food…\" he trails off as Christian interrupts to say he's hungry. Hector gives him a single slice of pineapple, pre-cut to ensure he has no more than his required sugar intake for the morning.","blocks":[{"type":"fragment","model":{"text":"\"For him, it's all food…\" he trails off as Christian interrupts to say he's hungry. Hector gives him a single slice of pineapple, pre-cut to ensure he has no more than his required sugar intake for the morning.","attributes":[]}}]}}]}},{"type":"image","model":{"emphasiseImage":false,"media":{"__typename":"ComponentsImage","src":"https://web.archive.org/web/20201128153421/https://c.files.bbci.co.uk/6125/production/_110196842_picture41-2.jpg","srcSet":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/240/cpsprodpb/6125/production/_110196842_picture41-2.jpg 240w, https://ichef.bbci.co.uk/news/320/cpsprodpb/6125/production/_110196842_picture41-2.jpg 320w, https://ichef.bbci.co.uk/news/480/cpsprodpb/6125/production/_110196842_picture41-2.jpg 480w, https://ichef.bbci.co.uk/news/624/cpsprodpb/6125/production/_110196842_picture41-2.jpg 624w, https://ichef.bbci.co.uk/news/800/cpsprodpb/6125/production/_110196842_picture41-2.jpg 800w","height":549,"width":976,"alt":"Christian eating","loading":"lazy"}}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Prader-Willi, which comes from a deletion or repetition in Chromosome 15, has a devastating effect on patients and their families. ","blocks":[{"type":"fragment","model":{"text":"Prader-Willi, which comes from a deletion or repetition in Chromosome 15, has a devastating effect on patients and their families. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"As well as often suffering from obesity and diabetes which shortens their life expectancy, children with the condition have mental development issues and behavioural problems. ","blocks":[{"type":"fragment","model":{"text":"As well as often suffering from obesity and diabetes which shortens their life expectancy, children with the condition have mental development issues and behavioural problems. ","attributes":[]}}]}}]}},{"type":"unorderedList","model":{"blocks":[{"type":"listItem","model":{"blocks":[{"type":"urlLink","model":{"text":"The girl who is always hungry","locator":"https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/health-41599455/the-girl-who-s-always-hungry","blocks":[{"type":"fragment","model":{"text":"The girl who is always hungry","attributes":[]}}]}}]}},{"type":"listItem","model":{"blocks":[{"type":"urlLink","model":{"text":"Katie Price tells of struggles caring for disabled son Harvey","locator":"https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/uk-47146784/katie-price-tells-of-struggles-caring-for-disabled-son-harvey","blocks":[{"type":"fragment","model":{"text":"Katie Price tells of struggles caring for disabled son Harvey","attributes":[]}}]}}]}}]}},{"type":"crosshead","text":"Rare illness"},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Christian is a good-natured man but can fly into violent rages if denied access to the food he wants. ","blocks":[{"type":"fragment","model":{"text":"Christian is a good-natured man but can fly into violent rages if denied access to the food he wants. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"It's like a category five hurricane, flattening anything in its path,\" his father says, showing me a disturbing video of a recent violent episode. ","blocks":[{"type":"fragment","model":{"text":"\"It's like a category five hurricane, flattening anything in its path,\" his father says, showing me a disturbing video of a recent violent episode. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"His parents even resorted to tying Christian to a padded chair to prevent him from self-harming or hurting his care-givers. ","blocks":[{"type":"fragment","model":{"text":"His parents even resorted to tying Christian to a padded chair to prevent him from self-harming or hurting his care-givers. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"I just take things one day at a time,\" says Hector, unable to hold back the tears. \"I don't know what will happen to him after I'm gone,\" a common concern for the parents of Prader-Willi children. ","blocks":[{"type":"fragment","model":{"text":"\"I just take things one day at a time,\" says Hector, unable to hold back the tears. \"I don't know what will happen to him after I'm gone,\" a common concern for the parents of Prader-Willi children. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Dealing with the complications of the disease are especially tough in Cuba. ","blocks":[{"type":"fragment","model":{"text":"Dealing with the complications of the disease are especially tough in Cuba. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Hector tries to feed his son a macrobiotic diet to keep his weight and blood sugar in check. However, it's hard to find the right food and medicines on an island crippled by a decades-long US economic embargo and years of economic mismanagement by the state. ","blocks":[{"type":"fragment","model":{"text":"Hector tries to feed his son a macrobiotic diet to keep his weight and blood sugar in check. However, it's hard to find the right food and medicines on an island crippled by a decades-long US economic embargo and years of economic mismanagement by the state. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Although the Cuban government lauds its healthcare system, it is suffering from a chronic lack of investment and Hector says doctors in Cuba have next to no experience with treating Prader-Willi. ","blocks":[{"type":"fragment","model":{"text":"Although the Cuban government lauds its healthcare system, it is suffering from a chronic lack of investment and Hector says doctors in Cuba have next to no experience with treating Prader-Willi. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"Being a rare illness, there are very few doctors in the country who have ever seen any patients with it,\" he explains. \"They might have seen one case in 20 years and then never have seen another. There is no specialist here.\"","blocks":[{"type":"fragment","model":{"text":"\"Being a rare illness, there are very few doctors in the country who have ever seen any patients with it,\" he explains. \"They might have seen one case in 20 years and then never have seen another. There is no specialist here.\"","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"He says patients should be seen by a range of specialists with an understanding of Prader-Willi, from nutritionists and dietitians to psychiatrists and physiotherapists. ","blocks":[{"type":"fragment","model":{"text":"He says patients should be seen by a range of specialists with an understanding of Prader-Willi, from nutritionists and dietitians to psychiatrists and physiotherapists. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Still, things are beginning to change. ","blocks":[{"type":"fragment","model":{"text":"Still, things are beginning to change. ","attributes":[]}}]}}]}},{"type":"crosshead","text":"Getting help"},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Last month, Cuba hosted the tenth international Prader-Willi conference. The forum brought together researchers, clinicians, patients and their families under one roof to share their experiences. ","blocks":[{"type":"fragment","model":{"text":"Last month, Cuba hosted the tenth international Prader-Willi conference. The forum brought together researchers, clinicians, patients and their families under one roof to share their experiences. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"It is an invaluable opportunity, says president of the International Prader-Willi Organisation, Prof Tony Holland: \"The most important aspect is to get families, scientists and care-givers - some from countries that have very good services, some that have very poor services or no services - to learn from each other.\" ","blocks":[{"type":"fragment","model":{"text":"It is an invaluable opportunity, says president of the International Prader-Willi Organisation, Prof Tony Holland: \"The most important aspect is to get families, scientists and care-givers - some from countries that have very good services, some that have very poor services or no services - to learn from each other.\" ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"The intention is that people can then \"argue for better services, can argue for the right treatments for their children\" when they go home, he says. ","blocks":[{"type":"fragment","model":{"text":"The intention is that people can then \"argue for better services, can argue for the right treatments for their children\" when they go home, he says. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"As emeritus professor of psychiatry at Cambridge University, Prof Holland has had years of involvement with Prader-Willi syndrome and has seen the state of care of the condition in many parts of the world. Despite the huge advances still needed in Cuba, he believes there are some encouraging signs:","blocks":[{"type":"fragment","model":{"text":"As emeritus professor of psychiatry at Cambridge University, Prof Holland has had years of involvement with Prader-Willi syndrome and has seen the state of care of the condition in many parts of the world. Despite the huge advances still needed in Cuba, he believes there are some encouraging signs:","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"Cuba now has the ability in their health service to do the genetic diagnosis. Their doctors are beginning to recognise Prader-Willi syndrome, there is a community of families of people with Prader-Willi syndrome, and that is really important.\"","blocks":[{"type":"fragment","model":{"text":"\"Cuba now has the ability in their health service to do the genetic diagnosis. Their doctors are beginning to recognise Prader-Willi syndrome, there is a community of families of people with Prader-Willi syndrome, and that is really important.\"","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"That coincides with Hector's experience. In 2010, affected parents held their first national meeting. Only six turned up. Today, there are more than 100 Cuban families identified with the disease and, thanks to improvements in internet access in Cuba, they are in constant touch.","blocks":[{"type":"fragment","model":{"text":"That coincides with Hector's experience. In 2010, affected parents held their first national meeting. Only six turned up. Today, there are more than 100 Cuban families identified with the disease and, thanks to improvements in internet access in Cuba, they are in constant touch.","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"Hector serves up a plate of raw vegetables and a wholewheat rice cake for Christian's lunch. Even finding rice cakes is a struggle in Cuba. But Hector is now familiar at dealing with the needs of a Prader-Willi sufferer on a Communist-run island. He's even started to teach other people in his neighbourhood about the disease. ","blocks":[{"type":"fragment","model":{"text":"Hector serves up a plate of raw vegetables and a wholewheat rice cake for Christian's lunch. Even finding rice cakes is a struggle in Cuba. But Hector is now familiar at dealing with the needs of a Prader-Willi sufferer on a Communist-run island. He's even started to teach other people in his neighbourhood about the disease. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"He explains to them that Christian is not just a little chubby and mentally undeveloped - but at mortal risk, every day. ","blocks":[{"type":"fragment","model":{"text":"He explains to them that Christian is not just a little chubby and mentally undeveloped - but at mortal risk, every day. ","attributes":[]}}]}}]}},{"type":"text","model":{"blocks":[{"type":"paragraph","model":{"text":"\"There's a tendency here to reward kids for being good with candies,\" he observes. \"But people don't realise that one sweet here, another one there - that could kill him.\"","blocks":[{"type":"fragment","model":{"text":"\"There's a tendency here to reward kids for being good with candies,\" he observes. \"But people don't realise that one sweet here, another one there - that could kill him.\"","attributes":[]}}]}}]}}],"seeAlsos":[],"relatedUrls":[{"contentType":"link","headline":"Katie Price tells of struggles caring for disabled son Harvey - BBC News","type":"link","url":"https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/uk-47146784/katie-price-tells-of-struggles-caring-for-disabled-son-harvey"},{"contentType":"link","headline":"The little girl who is always hungry - BBC News","type":"link","url":"https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/av/health-41574780/the-little-girl-who-is-always-hungry"}],"tags":[{"title":"Life","url":"/news/topics/cn1rn5m78egt","isEvent":false},{"title":"Cuba","url":"/news/topics/c40rjmqdqnlt","isEvent":false}]},"importance":"PRIMARY"},"onward-journeys?country=us&id=topStories&language=en-GB&mode=undefined§ion=%2Fnews%2Fhealth§ionHeader=Top%20Stories&showFirstSummary=true&showTimestamp=true":{"name":"onward-journeys","props":{"id":"topStories","sectionHeader":"Top Stories","showFirstSummary":true,"showTimestamp":true,"country":"us","section":"/news/health","language":"en-GB"},"data":[{"headline":"Iran blames Israel for death of nuclear scientist","url":"/news/world-middle-east-55111064","timestamp":1606566659000,"summary":"Israel has not commented on the killing of Mohsen Fakhrizadeh in an ambush on his car on Friday.","type":"STY","image":{"alt":"Prominent Iranian scientist Mohsen Fakhrizadeh in an undated photo","height":549,"loading":"lazy","src":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/385/cpsprodpb/DDF1/production/_115671865_064537263-1.jpg","width":976},"timestampRelative":"3 hours ago"},{"headline":"Tigray capital in north Ethiopia 'under attack'","url":"/news/world-africa-55111061","timestamp":1606569838000,"summary":"The Ethiopian military has started to shell the besieged regional capital Mekelle, reports say.","type":"STY","image":{"alt":"Ethiopian soldiers","height":549,"loading":"lazy","src":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/385/cpsprodpb/B1B9/production/_115679454_gettyimages-1229782422.jpg","width":976},"timestampRelative":"2 hours ago"},{"headline":"Trump's Pennsylvania lawsuit rejected on appeal","url":"/news/election-us-2020-55109168","timestamp":1606515960000,"summary":"The three judges said no specific allegations or proof of election fraud were given by Trump's team.","type":"STY","image":{"alt":"US President Donald Trump","height":432,"loading":"lazy","src":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/385/cpsprodpb/101C5/production/_115598956_mediaitem115598955.jpg","width":768},"timestampRelative":"17 hours ago"}],"importance":"SECONDARY"},"onward-journeys?country=us&id=features&language=en-GB&mode=undefined§ion=%2Fnews%2Fhealth§ionHeader=Features&showImage=true":{"name":"onward-journeys","props":{"id":"features","sectionHeader":"Features","showImage":true,"country":"us","section":"/news/health","language":"en-GB"},"data":[{"headline":"How the Donut King went from rags to riches twice","url":"https://web.archive.org/web/20201128153421/https://www.bbc.co.uk/news/stories-54546427","timestamp":1606398938000,"summary":"Cambodian refugee Ted Ngoy made a fortune in doughnuts then lost it all to gambling.","image":{"alt":"Ted Ngoy with a classic pink donut box","height":549,"loading":"lazy","src":"https://web.archive.org/web/20201128153421/https://ichef.bbci.co.uk/news/385/cpsprodpb/1178D/production/_115656517_976xpinkboxstills_1.1.2.jpg","width":976},"timestampRelative":"2 days ago"},{"headline":"Has England's lockdown worked?","url":"/news/health-55103165","timestamp":1606503434000,"summary":"England is moving out of national restrictions into a tougher tier system than before. 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