<div>Muziekleraar, muzikant, dirigent, rustig en zorgzaam individu, liefhebbende vader van zijn dochtertjes Sofie (4) en Emma (nog geen 1), toegewijde echtgenoot en de liefde van mijn leven… En dan is ‘tot de dood ons scheidt’ ineens niet langer meer een vaag begrip ver weg in de toekomst. Lex heeft kanker. Een agressieve zeldzame vorm die steeds terugkomt. En we hebben jouw hulp nodig!
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<div>Lees het gehele verhaal en meer op onze website: <a href="https://www.lexbak.nl" target="_blank" rel="noreferrer noopener">www.lexbak.nl</a>
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</div><img alt="57416443_1623523179952909_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/57416443_1623523179952909_r.jpeg" width="100%" />
<div>~~ English version below ~~
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<div>Mijn naam is Sarina (34). Ik ben deze crowdfunding gestart, om de behandeling mogelijk te maken die het leven van mijn lieve man Lex (41) kan redden en hem zelfs zou kunnen genezen van de zeldzame vorm van kanker in zijn ruggenmerg: Diffuus Midline Glioom (DMG) met de H3 K27M mutatie. 
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<div>Na een lange periode van vage klachten in zijn rechterarm, kregen we op 5 oktober 2020 het nieuws dat er een tumor van 5 cm, in Lex zijn nek (ruggenmerg) zat. Maar de kans dat deze kwaadaardig zou zijn was nihil volgens de artsen. Op 26 februari 2021 volgde een zenuwslopende operatie van ruim 8 uur. Welke helaas resulteerde in een incomplete dwarslaesie en een lange periode van revalideren. Ook konden ze maar een gedeelte van de tumor verwijderen. 
</div><img alt="57416443_1656796044278073_r.png" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/57416443_1656796044278073_r.png" width="100%" />
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<div>En toen kwam de grootste klap, de uitslag van het weefselonderzoek: een zeldzame, agressieve vorm van kanker genaamd Diffuus Midline Glioom (DMG) met de H3 K27M mutatie. Een mutatie die vooral bij kinderen voorkomt en waar maar weinig over bekend is, zeker in volwassenen. Er is geen genezing mogelijk, de beste uitkomst zou zijn dat de tumor niet verder zou groeien. Om de groei te stoppen werd er gelijk gestart met bestralingen. Zes weken lang reden we elke werkdag samen naar het AMC. Op 31 mei 2021 was de laatste bestraling. 
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<div>Nu is het afwachten, zonder verdere behandeling is de prognose zeer slecht. De kans dat Lex hier uiteindelijk aan komt te overlijdt is zeer groot. De kans dat de bestraling voldoende heeft gewerkt om de tumor niet meer verder te laten groeien, is klein en als de tumor weer gaat groeien zijn de conventionele behandelopties zeer beperkt en niet heel effectief. We zijn gezegend dat Lex zijn tumor sinds 31 mei 2021 stabiel is, maar de bom die in zijn lichaam zit, kan ieder moment ontploffen. 
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<div>Gelukkig zijn er onderzoeken gaande naar behandeling van dit type kanker, maar wel allemaal in het buitenland en vooral in de VS. Er zijn wel al een aantal veelbelovende ontwikkelingen. Maar om een kans te hebben op een effectieve behandeling en mogelijke genezing, is er veel geld nodig, gezien de verzekeraar een behandeling in het buitenland niet vergoed. Al met al kunnen de kosten oplopen tot zo’n €300.000!!! Daarom deze crowdfunding, waarbij ik jullie vraag om bij te dragen aan de kosten voor de behandeling die Lex nodig heeft.
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<div>Helpen jullie mee Lex de beste kans te geven, zodat Sofie, Emma en ik onze lieve papa en man niet zullen verliezen? 
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<div><strong>Let op! </strong>Bij het doneren op GoFundMe verschijnt de optie om ook een donatie aan de website van GoFundMe zelf te schenken. Als u geen behoefte heeft om aan de site te schenken kunt u de groene stip verplaatsen naar 0% of 0 invullen als u “Voer aangepaste fooi in” selecteert.
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</div><img alt="57416443_1623523280238862_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/57416443_1623523280238862_r.jpeg" width="100%" /><iframe media_type="0" media_id="U39hJZYGIwA" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/U39hJZYGIwA/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
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<div>Primary school music teacher, musician, conductor, calm and caring individual, loving father of his llittle girls Sofie (4) and Emma (less than 1) and devoted husband to the love of his life… And then, suddenly, ‘until death do us part’ is no longer a vague concept far away in the future. Lex has cancer. An aggressive rare form that keeps on coming back. And we need your help to fight it.
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<div>Read the entire story and more on our website: <a href="https://www.lexbak.nl" target="_blank" rel="noreferrer noopener">www.lexbak.nl </a>
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<div>My name is Sarina (34). I started this crowdfunding to raise the money we need to finance the one treatment that could save my dear husband Lex’s (41) life. He was diagnosed with a rare form of cancer in his spinal cord: Diffuse Midline Glioma (DMG) with an H3 K27M mutation. 
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<div>After a long period of vague symptoms in his right arm, we received the news on October 5, 2020 that there was a tumor of 5 cm, in Lex's neck (spinal cord). But the chance of this being malignant was nil according to the doctors. On February 26, 2021 a nerve-racking operation of over 8 hours followed. Which unfortunately resulted in an incomplete spinal cord injury and a long period of rehabilitation. Also, they could only remove a portion of the tumor. And then came the biggest blow, the results of the tissue biopsy: a rare, aggressive form of cancer called Diffuse Midline Glioma (DMG) with the H3 K27M mutation. A mutation that occurs mostly in children and of which very little is known, especially in adults. There is no cure, the best outcome would be for the tumor to stop growing. To stop the growth, radiation therapy was started immediately. For six weeks we drove together to the AMC every working day. On May 31, 2021 was the last radiation treatment. 
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<div>Now we have to wait and see, without further treatment the prognosis is very poor. The chance that Lex will ultimately die is very high. The chance that the radiation has done enough to stop the tumor from growing is small and if the tumor starts growing again, the conventional treatment options are very limited and not very effective. We are very blessed that Lex’ s tumor is stable as of May 31, 2021, but the bomb inside his body could explode at any moment. 
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<div>Fortunately, there are studies ongoing on treatment for this type of cancer, but all abroad and especially in the US. There are some promising developments though. But, to have a chance at an effective treatment and possible cure, a lot of money is needed, since insurers do not reimburse treatment abroad. All in all, we could be looking at a total of about €300,000 (approximately £259,000 or $367,000 USD)!!! That is the reason for this crowdfunding, in which I would like to ask you to contribute to the cost of Lex’s treatment, his only hope.
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<div>Could you please help give Lex the best chance at recovery, so that Sofie and I won’t lose our darling father and husband?
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<div><strong>Please note! </strong>When donating on the GoFundMe website, there is also an option to donate to GoFundMe itself. If you would prefer not to, you can move the green dot to 0% or fill in 0 when selecting “Enter custom tip”. 
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Anonymous

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