{"page":"\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/resources-572d6a42.css\" /\u003e\n\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/lp_boclips_stylesheets-f4d0de30.css\" media=\"all\" /\u003e\n\u003cdiv data-title='The parents of a little boy suffering from a rare disease raise money for treatment' data-url='/boclips/videos/5c54bcefd8eafeecae13058e' data-video-url='/boclips/videos/5c54bcefd8eafeecae13058e' id='bo_player_modal'\u003e\n\u003cdiv class='boclips-resource-page modal-dialog panel-container'\u003e\n\u003cdiv class='react-notifications-root'\u003e\u003c/div\u003e\n\u003cdiv class='rp-header'\u003e\n\u003cdiv class='rp-type'\u003e\n\u003ci aria-hidden='true' class='fai fa-regular fa-circle-play'\u003e\u003c/i\u003e\nVideo\n\u003c/div\u003e\n\u003ch1 class='rp-title' id='video-title'\u003e\nThe parents of a little boy suffering from a rare disease raise money for treatment\n\u003c/h1\u003e\n\u003cdiv class='rp-actions'\u003e\n\u003cdiv class='mr-1'\u003e\n\u003ca class=\"btn btn-success\" data-posthog-event=\"Signup: LP Signup Activity\" data-posthog-location=\"body_link_boclips\" data-remote=\"true\" href=\"/subscription/new\"\u003e\u003cspan\u003e\u003cspan\u003eGet Free Access\u003c/span\u003e\u003cspan class=\"\"\u003e for 10 Days\u003c/span\u003e\u003cspan\u003e!\u003c/span\u003e\u003c/span\u003e\u003c/a\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-body'\u003e\n\u003cdiv class='rp-info'\u003e\n\u003cdiv aria-label='Hide resource details' class='rp-hide-info' role='button' tabindex='0'\u003e\u0026times;\u003c/div\u003e\n\u003ci aria-label='Expand resource details' class='rp-expand-info fai fa-solid fa-up-right-and-down-left-from-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003ci aria-label='Compress resource details' class='rp-compress-info fai fa-solid fa-down-left-and-up-right-to-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003cdiv class='rp-rating'\u003e\n\u003cspan class='resource-pool'\u003e\n\u003cspan class='pool-label'\u003ePublisher:\u003c/span\u003e\n\u003cspan class='pool-name'\u003e\n\u003cspan class='text'\u003e\u003ca data-publisher-id=\"30356011\" href=\"/search?publisher_ids%5B%5D=30356011\"\u003eCurated Video\u003c/a\u003e\u003c/span\u003e\n\u003c/span\u003e\n\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-description'\u003e\n\u003cspan class='short-description'\u003e1. Wide of Diego Fuentes Rivas's sister drawing a picture, Diego in his mother's arms in background2. Close up of Diego3. Wide of Diego's sister folding picture, Diego in his mother's arms in background4. Diego in his mother arms5. Pull...\u003c/span\u003e\n\u003cspan class='full-description hide'\u003e1. Wide of Diego Fuentes Rivas's sister drawing a picture, Diego in his mother's arms in background\u003cbr/\u003e2. Close up of Diego\u003cbr/\u003e3. Wide of Diego's sister folding picture, Diego in his mother's arms in background\u003cbr/\u003e4. Diego in his mother arms\u003cbr/\u003e5. Pull out from Diego's sister folding picture to Diego in mother's arms\u003cbr/\u003e6. SOUNDBITE (Spanish) Marisol Rivas, Diego's mother:\u003cbr/\u003e\"It's very complicated, I give 100% of my life to Diego. I have a 4-year-old daughter, and she has to understand that most of my time is given to Diego, and I can only give whatever is left to her.\"\u003cbr/\u003e7. Various of Diego's sister showing Diego and mother the picture she drew\u003cbr/\u003e8. SOUNDBITE (Spanish) Marisol Rivas, Diego's mother:\u003cbr/\u003e\"It begins with an inflammation in his hands, which becomes red. Then comes a necrosis, it all turns purple, as if it did not receive blood, the oxygen does not get to the fingers, and they start to decay. The blood congeals into a micro-thrombosis, and that means that the child is going to lose a finger. At the first, second or third knuckle. It depends on where it happens.\"\u003cbr/\u003e9. Close up of Diego's hand\u003cbr/\u003e10. Diego's feet on his mother's lap\u003cbr/\u003e11. Close up of Diego's feet\u003cbr/\u003e12. SOUNDBITE (Spanish) Marisol Rivas, Diego's mother:\u003cbr/\u003e\"On his feet, on the right foot he's lost a complete toe, and half of another. On his left foot, the little toe. On his hands only the thumbs are complete, every other finger has lost one or two sections.\"\u003cbr/\u003e13. Diego in his mother's arms \u003cbr/\u003e14. Wide of Calvo McKenna Hospital waiting room\u003cbr/\u003e15. Various of Diego in his grandmother's arms, playing with his sister and a stuffed toy\u003cbr/\u003e16. SOUNDBITE (Spanish) Diego's grandmother (name unknown): \u003cbr/\u003e\"There was always a hope that this was going to stop next week, or next month. But a year passed, and now it's nearly two years. It has been horrible see how the child is wearing away.\"\u003cbr/\u003e17. Dr Benito Gonzalez, paediatrician and immunologist at desk\u003cbr/\u003e18. SOUNDBITE (Spanish) Dr Benito Gonzalez, Paediatrician and Immunologist :\u003cbr/\u003e\"We have reached the conclusion that this process corresponds to a newly-identified disease just being diagnosed in the United States called Infantile PAV (Peripheral Aterial Vasculitis), that is an illness that affects the blood vessels in infants from birth, and leads to the loss of fingers through a thrombotic process.\"\u003cbr/\u003e19. Doctor writing at desk\u003cbr/\u003e20. SOUNDBITE (Spanish) Dr Benito Gonzalez, Paediatrician and Immunologist :\u003cbr/\u003e\"The cases are just being described in the United States. We don't know how the disease progresses or how far can it go. And also the treatments are in the research phase, to see which is the best treatment to stop the thrombotic phenomena. We are using new biological agents to fight this illness.\"\u003cbr/\u003e21. Various Diego playing with another boy and a toy car\u003cbr/\u003e22. Various Diego leaving hospital\u003cbr/\u003e23. Exterior of hospital\u003cbr/\u003e24. Diego and mother after they have left hospital \u003cbr/\u003eDiego Fuentes Rivas has been in and out of hospitals more times before his second birthday than most people do during their whole lives. \u003cbr/\u003eDiego suffers from a rare disease that has already cost him parts of his fingers and toes.\u003cbr/\u003eDieguito (little Diego) has been diagnosed with Infantile PAV (Peripheral Aterial Vasculitis), a disease that affects his extremities - his fingers and toes.\u003cbr/\u003eThis is because of micro-thrombosis. A thrombosis is a blood clot which blocks a blood vessel.\u003cbr/\u003eThe blood vessels in several of Diego's fingers and toes have become blocked by blood clots. \u003cbr/\u003eDiego's mother, Marisol, says they have gone through the process several times.\u003cbr/\u003eMarisol says that the problem begins with an inflammation in Diego's hands, which then develops into necrosis (the death of cells and living tissue).\u003cbr/\u003eEverything then turns purple because the cells are not receiving any  blood. \u003cbr/\u003eOxygen cannot reach the fingers, so they start to decay. \u003cbr/\u003eThe blood in Diego's fingers then congeals, causing a micro-thrombosis, which means the child will probably lose a finger. \u003cbr/\u003eDiego has already lost parts from most of his fingers and toes.\u003cbr/\u003eThere are only eight known cases of Infantile PAV in the whole world. \u003cbr/\u003eDiego's family is very worried because they don't know what will happen to the boy as the disease progresses. \u003cbr/\u003eThe whole family, including Diego's four year old sister, have had to make tremendous sacrifices. \u003cbr/\u003eDiego's mother says caring for her son has taken over her life.\u003cbr/\u003eThe blood clots could start to affect other blood vessels in Diego's body, possibly causing a fatal blockage in his lungs, heart or brain. \u003cbr/\u003eDiego's grandmother says they are trying not to give up hope.\u003cbr/\u003eThe family often have to make the 500 kilometre journey north to the capital city Santiago, to take Diego to hospital.  \u003cbr/\u003eDr Benito Gonzalez, a paediatrician at the Calvo McKenna Hospital in Santiago, says that very little is known about Diego's disease.\u003cbr/\u003eDoctors don't know how the disease develops or how far can it go. And all treatments for the disease are still in the research phase.\u003cbr/\u003eA specialist in the United States has offered to treat Diego, but the case is so complex that Diego must undergo a thorough examination in the US to see if treatment is possible.\u003cbr/\u003eDiego's current treatment costs more than 500,000 Chilean pesos (US$850) every month. \u003cbr/\u003eDiego's parents don't have the financial resources to afford such expenses, so they spend much of their time fund-raising to meet treatment costs, and for the trip to the United States.\u003cbr/\u003eKeyword-medical- health\u003cbr/\u003e\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='action-container flex justify-between'\u003e\n\u003cbutton aria-expanded='false' aria-label='Read more description' class='rp-full-description' type='button'\u003e\n\u003ci class='fai fa-solid fa-align-left'\u003e\u003c/i\u003e\n\u003cspan id='read_more'\u003eRead More\u003c/span\u003e\n\u003c/button\u003e\n\u003cdiv 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