Help Gioia (4) vechten tegen hersentumor

NL/ PT / EN

Lieve mensen,

Dit is Gioia Jalivia – een prachtig, lief en vrolijk meisje van 4 jaar oud. Ze is de een-na-jongste van zes kinderen en het zonnetje in haar gezin. Twee weken geleden kregen wij als familie het hartverscheurende nieuws dat Gioia een zeldzame, kwaadaardige en zeer agressieve tumor bij haar hersenstam heeft: Diffuus Midline Glioom (graad IV).

De artsen in Nederland hebben aangegeven dat er geen genezende behandeling mogelijk is. Alleen een korte bestraling kan de groei tijdelijk afremmen. De prognose die haar ouders kregen, is dat Gioia nog ongeveer 9 maanden te leven heeft…

*Maar er is hoop*

Gioia komt in aanmerking voor deelname aan een internationale studie in Spanje, waarbij gebruik wordt gemaakt van het experimentele medicijn ONC201. Deze studie richt zich specifiek op kinderen met een H3K27M-mutatie – precies het type tumor dat bij Gioia is vastgesteld.

ONC201 is een veelbelovend medicijn dat de groei van de tumor mogelijk kan remmen en de kwaliteit van leven kan verbeteren. De ouders hopen eind juni te kunnen starten met het traject in Spanje.

Zoals je je kunt voorstellen, brengt dit alles enorme kosten met zich mee: voor het verblijf, medische zorg, reizen, én het opbouwen van kostbare herinneringen met het hele gezin van acht personen. Daarom hebben wij als familie deze GoFundMe opgezet.

Wat willen wij doen met de donaties?

* Deelname aan de behandeling in Spanje mogelijk maken

* De hoge kosten voor reizen en verblijf helpen dragen

* Gioia en haar gezin mooie, liefdevolle herinneringen geven.

Elke bijdrage, hoe klein ook, helpt.

Help jij mee om Gioia de kans op meer tijd en liefdevolle momenten te geven?

Namens de hele familie: dank je wel.

Voor je donatie, voor het delen, voor je liefde.

De organisator van deze actie, Latoya Ferdinandus, fungeert als tussenpersoon met als enige doel het geld veilig en doelgericht over te dragen aan de familie van Gioia.

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Portuguese Translation

Queridas pessoas,

Esta é Gioia Jalivia – uma menina linda, doce e alegre de 4 anos. Ela é a segunda mais nova de seis filhos e o raio de sol da sua família. Há duas semanas, recebemos a notícia devastadora de que Gioia tem um tumor raro, maligno e muito agressivo no tronco cerebral: Glioma Difuso de Linha Média (grau IV).

Os médicos na Holanda disseram que não há tratamento curativo possível. Apenas uma breve radioterapia pode retardar temporariamente o crescimento do tumor. A previsão dada aos seus pais é que Gioia tem cerca de 9 meses de vida…

Mas há esperança

Gioia é elegível para participar de um estudo internacional na Espanha, que utiliza o medicamento experimental ONC201. Este estudo é direcionado especificamente para crianças com a mutação H3K27M – exatamente o tipo de tumor diagnosticado em Gioia.

O ONC201 é um medicamento promissor que pode ajudar a retardar o crescimento do tumor e melhorar a qualidade de vida. Os pais de Gioia esperam iniciar o tratamento na Espanha no final de junho.

Como você pode imaginar, tudo isso envolve custos enormes: hospedagem, cuidados médicos, viagens e – tão importante quanto – criar memórias preciosas com toda a família de oito pessoas. Por isso, nós, como família, iniciamos esta campanha no GoFundMe.

O que queremos fazer com as doações?

• Tornar possível a participação no tratamento na Espanha

• Ajudar a cobrir os altos custos de viagem e estadia

• Proporcionar à Gioia e sua família memórias lindas e cheias de amor

Cada contribuição, por menor que seja, faz a diferença.

Você pode ajudar a dar à Gioia mais tempo e momentos cheios de amor?

Em nome de toda a família: muito obrigado.

Pela sua doação, por compartilhar, por seu carinho.

A organizadora desta campanha, Latoya Ferdinandus, atua como intermediária com o único objetivo de transferir os fundos de forma segura e direcionada à família da Gioia.

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English Translation

Dear friends,

This is Gioia Jalivia – a beautiful, sweet, and cheerful 4-year-old girl. She is the second youngest of six children and the sunshine of her family. Two weeks ago, our family received the heartbreaking news that Gioia has a rare, malignant, and very aggressive brainstem tumor: Diffuse Midline Glioma (Grade IV).

Doctors in the Netherlands have stated that there is no curative treatment available. Only short-term radiation may temporarily slow the tumor’s growth. The prognosis her parents received is that Gioia has approximately 9 months left to live…

But there is hope

Gioia is eligible to participate in an international study in Spain, which uses the experimental drug ONC201. This study specifically targets children with an H3K27M mutation – exactly the type of tumor Gioia has been diagnosed with.

ONC201 is a promising drug that may slow down the tumor’s growth and improve quality of life. Her parents hope to begin the treatment process in Spain by the end of June.

As you can imagine, all of this comes with enormous costs: for accommodation, medical care, travel, and – just as importantly – creating priceless memories with the entire family of eight. That’s why we, as her family, have launched this GoFundMe campaign.

What do we want to do with the donations?

• Make participation in the treatment in Spain possible

• Help cover the high costs of travel and accommodation

• Give Gioia and her family beautiful, loving memories

Every contribution, no matter how small, helps.

Will you help give Gioia a chance at more time and loving moments?

On behalf of the entire family: thank you.

For your donation, for sharing, for your love.

The organizer of this campaign, Latoya Ferdinandus, serves as an intermediary with the sole purpose of safely and purposefully transferring the funds to Gioia’s family.