{"id":220198,"date":"2025-10-17T12:27:17","date_gmt":"2025-10-17T12:27:17","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/220198\/"},"modified":"2025-10-17T12:27:17","modified_gmt":"2025-10-17T12:27:17","slug":"telethon-2025-charlie-cains-remarkable-journey-living-with-two-rare-genetic-conditions-since-birth","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/220198\/","title":{"rendered":"Telethon 2025: Charlie Cains remarkable journey living with two rare genetic conditions since birth"},"content":{"rendered":"

\u201cIt was the end of our life. If I could have run, I would of done it.\u201d<\/p>\n

This was just one of the gut-wrenching thoughts that passed through Laetitia Cain\u2019s mind in the devastating moment doctors diagnosed her newborn son Charlie with a disease that affects less than one in a million people worldwide.<\/p>\n

Charlie was just five days old when he was rushed into heart surgery in 2017. And what followed was a tidal wave of overwhelming news and fear.<\/p>\n

Charlie has Prader-Willi Syndrome \u2014 a complex genetic disorder that affects physical growth, intellectual development and behaviour. Only one in 15,000 babies in Australia is born with the condition.<\/p>\n

He also has Mosaic Trisomy 15, which is even rarer. It is literally a one-in-a-million chromosomal condition and brings a host of challenges, from growth restriction and heart defects to craniofacial abnormalities.<\/p>\n

At the time, Ms Cain had no roadmap. No one to lean on. And no hope.<\/p>\n

\"TelethonCamera IconTelethon 2025: Charlie has Prader Willi Syndrome, a rare genetic disorder. He is pictured with his mother Laetitia in Ocean Reef today. Michael Wilson Credit: Michael Wilson\/The West Australian<\/p>\n

\u201cIt was heartbreaking,\u201d she said.<\/p>\n

\u201cAt first, when he was born, we didn\u2019t see any hope . . . it\u2019s super dark. The darkness of the first year, I mean, I probably cried every day.<\/p>\n

\u201cIt is every parents worst fear, you think, it will never happen to me, but then it does . . . and it\u2019s just, I remember thinking it was the end of our life. If I could have run I would of done it.\u201d<\/p>\n

Even her closest relationships became strained under the unimaginable weight of uncertainty.<\/p>\n

\u201cYou feel very alone, depressed . . . even your family, your friends, they pity you. To be honest, that\u2019s the worst,\u201d she said.<\/p>\n

\u201cPeople try to be positive, they don\u2019t listen to your worry. They try to provide a solution to something that you can\u2019t fix.<\/p>\n

\u201cDisability is not going to go away.\u201d<\/p>\n

From the beginning, Ms Cain was told Charlie might never walk or talk, she said she imagined her son to be \u201ca vegetable.\u201d<\/p>\n

\"8-year-oldCamera Icon8-year-old Charlie Cain pictured during an occupational therapy session in Ocean Reef. Credit: Carwyn Monck\/The West Australian<\/p>\n

\u201cI accepted very quickly that Charlie was disabled and I accepted the worst,\u201d she said.<\/p>\n

\u201cI didn\u2019t try to hang onto the hope that he was going to talk or walk.<\/p>\n

\u201cCharlie didn\u2019t smile until he was six months. He didn\u2019t sit until he was 18 months. Didn\u2019t crawl until he was 18 months. He didn\u2019t walk until he was one.<\/p>\n

\u201cI learned sign (language) because I was told he wouldn\u2019t talk. I bought a book when he was four-months-old to start learning the signs.\u201d<\/p>\n

But against all odds, Charlie exceeded everyone\u2019s expectations.<\/p>\n

Ms Cain, originally from France, had moved to Perth in 2015 for work. Looking back she said it was not a coincidence \u2014 but fate.<\/p>\n

\u201cI absolutely think it was fate moving here. Telethon completely saved me and my family\u2019s life,\u201d she said.<\/p>\n

After months of isolation, desperation and grief, a nurse suggested Ms Cain try a local playgroup. She went once \u2014 and never went back.<\/p>\n

\u201cEveryone was so worried about breastfeeding and all of that,\u201d she said.<\/p>\n

\"CharlieCamera IconCharlie has Prader Willi Syndrome, a rare genetic disorder. He is pictured with his speech pathologist Kaylynn Oosthuizen. Credit: Michael Wilson\/The West Australian<\/p>\n

\u201cCharlie was tube-fed for a year. It explains a little bit how lonely you can be.\u201d<\/p>\n

But everything changed when she walked into the Down Syndrome WA playgroup office \u2014 a Telethon-funded organisation.<\/p>\n

\u201cCharlie was five months when I went in there, I was in tears, and asked if I could join the group.\u201d she said.<\/p>\n

\u201cGoing to the Down Syndrome WA playgroup was the best thing I\u2019ve done for myself after Charlie was diagnosed.<\/p>\n

\u201cYou meet other kids, you meet other parents, and suddenly you no longer feel alone.\u201d<\/p>\n

Through Telethon-funded services, Charlie has received years of specialised care.<\/p>\n

He began walking therapy with Healthy Strides at just two years old. He\u2019s also received support from Heart Kids, the Telethon Hearing Clinic and RDA Capricorn, where he\u2019s been horse riding for the past three years.<\/p>\n

\u201cIt was like I no longer felt alone,\u201d Ms Cain said.<\/p>\n

\u201cI suddenly was listened to by people who actually understand. They don\u2019t try to understand \u2014 they actually understand.\u201d<\/p>\n

\"LeadCamera IconLead Coach for the Diverse Ability Program Aimee Taylor 19, with Charlie during his gymnastics session at BK’s Gymnastics in Wangara. Credit: Jackson Flindell\/The West Australian<\/p>\n

To support his ongoing health and development, Charlie maintains a structured and active weekly schedule.<\/p>\n

On Tuesday afternoons, he participates in a private gymnastics class at BK\u2019s Gymnastics, focusing on improving his mobility.<\/p>\n

Wednesday mornings are dedicated to speech therapy sessions, followed by occupational therapy on Friday mornings. Later that day, he attends a private swimming lesson at Kirby Swim.<\/p>\n

Each Saturday, Charlie takes part in a group horse riding class with RDA Capricorn.<\/p>\n

Behind Charlie\u2019s big grin and infectious laughter there are constant battles \u2014 for both him and his family.<\/p>\n

\u201cCharlie doesn\u2019t drink water because he just doesn\u2019t feel thirsty,\u201d Ms Cain said.<\/p>\n

\"8-yea-oldCamera Icon8-yea-old Charlie Cain pictured on his bike with occupational therapist Anna Mason-Godding in Ocean Ree. Credit: Carwyn Monck\/The West Australian<\/p>\n

\u201cI tend to avoid playgrounds . . . riding the bike, even being outside, going to the shops, going to the beach, all of that because I have to worry about Charlie and his safety.<\/p>\n

\u201cWe basically just don\u2019t do things \u2014 there is lot of things that we can\u2019t do.<\/p>\n

\u201cI treat Charlie like if he was two-years-old.<\/p>\n

\u201cI have no choice, because he is actually worse than the two-year-olds. Two-year-olds, they are careful. If they see a step, they\u2019ll make sure they go over that step. Sometimes Charlie doesn\u2019t even see the step, so he\u2019ll fall.\u201d<\/p>\n

Through countless hardships the Cain family has found ways to \u201csee beauty in little things\u201d.<\/p>\n

\u201cI remember looking at him, when he still couldn\u2019t smile, and thinking \u2018well, he\u2019s still super cute\u2019,\u201d Ms Cain said.<\/p>\n

\u201cHe is our special boy and we are super proud of him.<\/p>\n

\u201cWe are still very conscious of the future, but we are not worried anymore.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cIt was the end of our life. If I could have run, I would of done it.\u201d This…\n","protected":false},"author":2,"featured_media":220199,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[25],"tags":[64,63,336,44,128,501],"class_list":["post-220198","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-au","tag-australia","tag-genetics","tag-news","tag-science","tag-telethon"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/220198","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=220198"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/220198\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/220199"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=220198"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=220198"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=220198"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}