<div>✍- NL-Eng-Portugees
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<div>Steun Ymara Mae in haar strijd tegen hersen tumor DIPG 
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<div>Beste familie, vrienden en lezers, 
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<div>Wij zijn de ouders van Ymara Mae, zij is 3 jaar. 
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<div>Een paar maanden geleden zijn we in een nachtmerrie terechtgekomen. 
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<div>Iets dat geen enkele ouder ooit wil. Na een lange periode van ziek zijn en na heel veel aandringen kregen we eindelijk de aandacht van onze huisarts. Onze dochter werd toen doorverwezen naar de spoedeisende hulp en vanaf daar is het balletje gaan rollen met uiteindelijk slecht nieuws! Ons meisje is heel erg ziek. De diagnose die wij kregen was, een zeer (zeldzame) agressieve vorm van hersentumor genaamd DIPG H3K27M. DIPG wordt ook wel Diffuus Midlijn Glioom (DMG) genoemd. Binnen deze groep vallen ook de tumoren die voorkomen in de thalamus, boven de hersenstam, en het ruggenmerg. In Nederland krijgen elk jaar ongeveer 10 kinderen de ziekte. 
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<div> <strong>Wat betekent dit voor ymara?</strong> 
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<div>Op het moment dat de tumor weer zal activeren, zal de drukking op haar hersens worden verhoogd en kunnen haar symptomen zijn: 
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<div> ◦ Een asymmetrisch oftewel scheef gezicht hebben.
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<div> ◦scheel kijken, dubbelzien en moeite hebben met praten en/of slikken. 
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<div> ◦Soms kunnen ze een arm of been niet goed bewegen. 
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<div> Wanneer de druk in de hersenen verhoogd raken, kan ze last krijgen van hoofdpijn en braken, problemen hebben in haar evenwicht, wankel gaan lopen en struikelen over haar eigen benen. 
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<div><strong>Ymara’s behandel verhaal zover</strong>
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<div>Ymara Mae is op 24 april begonnen met de behandeling radiatie en chemo en dat heeft zij afgerond op 6 juni. Dit heeft enigszins ervoor gezorgd dat de klachten die ze had zijn afgenomen (Gelukkig)! Nu moet de volgende stap genomen worden. We zijn samen met haar artsen nauwkeurig aan het kijken naar een behandelplan in Spanje ( Madrid) genaamd ONC201. 
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<div>Hier willen wij graag aan deelnemen om de kwaliteit van haar leven te verbeteren en nog zo lang mogelijk kostbare tijd met haar doorbrengen. We willen nog zo lang en goed mogelijk van ons meisje genieten als gezin, samen met naaste familie/vrienden, die ons ontzettend steunen in deze moeilijke tijd. 
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<div>In de tijd die haar nog gegeven wordt willen wij graag nog heel veel mooie herinneringen kunnen maken.
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<div><strong>Wij hebben jullie hulp daarom heel hard nodig! </strong>
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<div>Nu is er een mogelijkheid om deel te nemen aan een studie in Spanje (Madrid) met een bepaalde combinatie medicijnen (ONC201) die op de markt is voor dit type tumor. 
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<div>ONC201 is een nieuw medicijn dat zorgt voor een stressrespons in de tumorcellen. Ymara Mae is toegelaten voor de behandeling en zal binnen 23 dagen naar Spanje moeten. Voor nu weten we dat we 3 keer daar naar toe moeten voor 1 of meerdere dagen en daarna weer om de 3 maanden. 
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<div> Helaas zijn de medicijnen niet te krijgen in Nederland. Het is dan ook cruciaal en in Ymara Mae haar belang dat we alles goed geregeld hebben voor haar. 
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<div> Ook houden wij er rekening mee dat we verblijfplaats, vervoer en alles moeten regelen hiervoor. 
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<div> Dit medicijn zal ze voor de rest van haar leven moeten gebruiken, om vooral de levensverwachting te verlengen. Hierdoor kunnen de kosten behoorlijk oplopen. Daarom proberen wij zoveel mogelijk geld in te zamelen om alles te kunnen bekostigen. 
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<div><strong>Wij geven niet op!</strong> 
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<div>Als ouders willen wij de hoop niet opgeven en blijven we vechten voor haar omdat we zoveel en lang mogelijk als gezin van haar willen genieten.
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<div> Ymara Mae is een vrolijke en levenslustig meisje die nog zo veel meer te bieden heeft!
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<div><strong>Doneer</strong>
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<div>Elk bedrag, groot of klein, wordt zeer gewaardeerd en brengt ons een stap dichterbij om ervoor te zorgen dat Ymara Mae kan starten met de behandeling. In de tijd die haar nog gegeven wordt willen wij nog heel veel moois uit het leven halen. Naast de behandeling willen wij ook kostbare momenten verzamelen en haar alles ernaast bieden.
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<div>We zullen regelmatig updates plaatsen over de voortgang van de behandelingen, zodat jullie weten hoe jullie steun helpt. Daarnaast zullen vrienden en familie van Ymara Mae acties op touw zetten om meer geld in te zamelen. 
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<div> Liefs, ouders van Ymara Mae 
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<div>Chantal &amp; Michael
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<div>English ✍
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<div>Help Ymara Mae in Her Fight Against DIPG Brain Tumor 
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<div>Dear family, friends, and readers, 
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<div> We are the parents of Ymara Mae, a 3-year-old girl. 
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<div> A few months ago, we entered a nightmare that no parent should ever have to face. After a long period of illness and much insistence, we finally got the attention of our GP. Our daughter was then referred to the emergency room, and from there, the ball started rolling with ultimately bad news: Our girl is very sick. The diagnosis we received is a very rare and aggressive form of brain tumor called DIPG H3K27M. DIPG is also known as Diffuse Midline Glioma (DMG). This group includes tumors that occur in the thalamus, above the brainstem, and in the spinal cord. In the Netherlands, about 10 children are diagnosed with this disease each year. 
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<div><strong>What Does This Mean for Ymara? </strong>
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<div>When the tumor becomes active again, the pressure on her brain will increase, and her symptoms may include:
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<div> - An asymmetrical or crooked face,
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<div> -Crossed eyes, double vision, and difficulty speaking and/or swallowing, 
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<div>- Sometimes an inability to move an arm or leg properly. 
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<div> When the pressure in the brain increases, she may experience headaches, vomiting, balance problems, unsteady walking, and tripping over her own feet. 
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<div> <strong>Ymara’s Treatment So Far</strong>
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<div> Ymara Mae started radiation and chemotherapy treatment on April 24 and completed it on June 6. This has somewhat reduced the symptoms she was experiencing (fortunately)! 
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<div>Now, the next step must be taken. Together with her doctors, we are carefully looking at a treatment plan in Spain called ONC201. We want to participate in this to improve her quality of life and spend as much precious time with her as possible. We want to enjoy our girl as a family for as long and as well as possible, together with close family and friends who are incredibly supportive during this difficult time. In the time she has left, we want to make the most beautiful memories. 
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<div><strong>We Need Your Help Desperately! </strong>
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<div>There is now an opportunity to participate in a study in Spain (Madrid) with a specific combination of drugs (ONC201) available for this type of tumor. 
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<div>ONC201 is a new drug that induces a stress response in tumor cells. Ymara Mae has been accepted for the treatment and must travel to Spain within 23 days. We know we will need to travel there three times for one or more days and then every three months. Unfortunately, the drugs are not available in the Netherlands. Therefore, it is crucial and in Ymara Mae's best interest that everything is well organized for her. We also need to arrange accommodation, transportation, and everything else necessary for this. This medication will be needed for the rest of her life, primarily to extend her life expectancy. The costs can, therefore, be substantial. We are trying to raise as much money as possible to cover all expenses. 
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<div><strong>We Won't Give Up!</strong>
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<div> As parents, we refuse to give up hope and will continue to fight for her because we want to enjoy her as a family for as long as possible. 
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<div>Ymara Mae is a cheerful and lively girl who still has so much to offer! 
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<div> <strong>Donate</strong>
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<div> Every amount, big or small, is greatly appreciated and brings us one step closer to ensuring Ymara Mae can start the treatment. 
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<div> We will regularly post updates on the progress of the treatment so you know how your support is helping. Additionally, Ymara Mae's parants and family will organize events to raise more funds. 
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<div>With love, Ymara Mae's parents,
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<div> Chantal &amp; Michael
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<div>Portugees ✍
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<div>Adjude Ymara Mae em sua luta contra o tumor cerebral DIPG
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<div>Querida família, amigos e leitores,
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<div>Somos os pais de Ymara Mae, ela tem 3 anos.
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<div>Há alguns meses, entramos em um pesadelo. Algo que nenhum pai jamais deseja. Após um longo período de doenças e muita insistência, finalmente conseguimos a atenção do nosso médico de família. Nossa filha foi então encaminhada para a emergência e, a partir daí, a bola começou a rolar, com notícias ruins no final! Nossa menina está muito doente. O diagnóstico que recebemos foi de uma forma muito (rara) agressiva de tumor cerebral chamada DIPG H3K27M. O DIPG também é conhecido como Glioma de Linha Média Difusa (DMG). Dentro deste grupo estão os tumores que ocorrem no tálamo, acima do tronco cerebral, e na medula espinhal. Na Holanda, cerca de 10 crianças são diagnosticadas com a doença a cada ano.
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<div><strong>O que isso significa para Ymara?</strong>
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<div>No momento em que o tumor reativar, a pressão em seu cérebro aumentará e seus sintomas poderão ser:
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<div>◦ Ter um rosto assimétrico ou torto.
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<div>◦ Estrabismo, visão dupla e dificuldade para falar e/ou engolir.
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<div>◦ Às vezes, eles podem ter dificuldade em mover um braço ou uma perna.
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<div>Quando a pressão no cérebro aumenta, ela pode ter dores de cabeça e vômitos, problemas de equilíbrio, caminhar cambaleante e tropeçar em suas próprias pernas.
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<div><strong>História do tratamento de Ymara até agora</strong>
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<div>Ymara Mae começou o tratamento com radiação e quimioterapia em 24 de abril e terminou em 6 de junho. Isso reduziu parcialmente os sintomas que ela tinha (Felizmente)! Agora precisamos dar o próximo passo. Estamos trabalhando em estreita colaboração com seus médicos para um plano de tratamento na Espanha chamado ONC201.
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<div>Queremos participar para melhorar a qualidade de vida dela e passar o máximo de tempo precioso com ela. Queremos aproveitar nosso tempo com nossa filha como uma família, junto com parentes e amigos próximos que nos apoiam muito neste momento difícil.
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<div>No tempo que ainda temos, queremos aproveitar ao máximo a vida.
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<div><strong>Precisamos muito da sua ajuda!</strong>
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<div>Agora há uma oportunidade de participar de um estudo na Espanha (Madri) com uma combinação específica de medicamentos (ONC201) disponível para este tipo de tumor.
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<div>ONC201 é um novo medicamento que induz uma resposta de estresse nas células tumorais. Ymara Mae foi aceita para o tratamento e precisará ir para a Espanha dentro de 23 dias. Por enquanto, sabemos que precisamos ir lá 3 vezes por 1 ou mais dias e depois a cada 3 meses.
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<div>Infelizmente, os medicamentos não estão disponíveis na Holanda. Portanto, é crucial e no interesse de Ymara Mae que tudo esteja bem organizado para ela.
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<div>Também levamos em consideração que precisaremos organizar hospedagem, transporte e tudo mais.
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<div>Ela precisará tomar este medicamento pelo resto de sua vida, principalmente para prolongar sua expectativa de vida. Isso pode gerar custos consideráveis. Por isso, estamos tentando arrecadar o máximo de dinheiro possível para cobrir tudo.
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<div><strong>Não vamos desistir!</strong>
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<div>Como pais, não queremos perder a esperança e continuaremos lutando por ela, pois queremos aproveitar ao máximo e por mais tempo possível nosso tempo com ela como uma família.
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<div>Ymara Mae é uma menina alegre e cheia de vida, que ainda tem muito a oferecer!
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<div>Doe
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<div>Qualquer quantia, grande ou pequena, será muito apreciada e nos aproximará de garantir que Ymara Mae possa começar o tratamento. No tempo que ainda temos, queremos aproveitar ao máximo a vida. Além do tratamento, queremos também criar momentos preciosos e oferecer tudo o que pudermos a ela.
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<div>Postaremos atualizações regularmente sobre o progresso dos tratamentos, para que vocês saibam como seu apoio está ajudando. Além disso, amigos e familiares de Ymara Mae realizarão ações para arrecadar mais dinheiro.
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<div>Com carinho, os pais de Ymara Mae
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<div>Chantal &amp; Michael
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