Maithili dipg brainstemtumor

€29,459 of €70,000 goal

Raised by 386 people in 13 months

Wij zijn Stefanie Rotsaert en Samuël Vanhille uit Assebroek, Brugge, belgium.

Wij hebben een 12-jarig dochtertje, Maithili. Onze wereld stortte in toen er op 11 augustus jongstleden bij onze dochter een hersenstamtumor ontdekt werd. We hebben het hier over ponsglioom, DIPG. Dit is een zeer zeldzame tumor die jaarlijks in België bij 2 tot 3 kindjes voorkomt. Deze tumor kan niet operatief verwijderd worden omdat die door alle levensnoodzakelijke zenuwen verweven zit. De prognose die de behandelende artsen ons gegeven hebben is slecht. Men gaf ons nog 3 tot maximum 9 maanden, waarvan de laatste periode constante aftakeling...

Maithili onderging reeds radiotherapie, evanals immuuntherapie in Keulen en CED in Londen. Daarmee konden we de tumor stil houden. In mei ontdekten we dat de tumor resistent geworden is en lichtjes is beginnen groeien. Door de groei van de tumor zal die beginnen duwen op zenuwen die levensbelangrijk zijn waardoor ze zal verlamd geraken, slikproblemen, ademhalingsproblemen met de dood tot gevolg … 

Haar toestand is stabiel nu, maar hier in België kan men ons niet verder helpen en geven ze ons geen hoop meer. Wereldwijd wordt op enkele plaatsen onderzoek gedaan en ze zitten dicht bij een juiste behandeling. Zo zijn we in Monterrey, Mexico terechtgekomen waar men al 24 jaar onderzoek doet naar dit type tumoren bij kinderen. Hier combineert men immuuntherapie en chemotherapie en wordt die intra-arterieel toegediend. De resultaten zijn zeer hoopgevend! Zie hierbij ook krantenartikel van meisje uit Engeland die deze therapie volgt:
  http://www.dailymail.co.uk/femail/article-4570944/Terminally-ill-British-miracle-recovery.html

Na het raadplegen van onze ziekteverzekering kregen wij te horen dat, vanaf we naar het buitenland trekken voor een therapie die haar een kans op genezing geeft , we er alleen voor staan. Alle medische kosten dienen door onszelf gedragen te worden. We hebben het hier over bedragen van om en bij de 25000 euro per behandeling en Maithili heeft elke 3 weken een behandeling nodig... Hoeveel behandelingen ze nodig heeft zal afhangen van hoe de tumor reageert op de chemo die toegediend wordt. 
Hoewel wij beiden een vast inkomen hebben is dit te zwaar om dragen en niet haalbaar voor ons. 
Omwille van die reden zijn we begonnen met fundraising.

Zo kunnen we onze 12-jarige dochter een kans geven om haar leven te redden.  Na de eerste behandeling van 04/07/2017 zegt Maithili zelf dat ze terug meer kracht heeft in haar rechterhand en -been en merken wij dat ook het praten vlotter gaat.

Als je weet als ouder dat er een kans is om het meest kostbare in je leven te kunnen redden moet je die grijpen… We hopen dat jullie er ook zo over denken en ons hierbij kunnen helpen.

onze eeuwige dankbaarheid...
Sam en Stefanie

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Vrijdag krijgt maithili hier in Mexico haar 2de behandeling. Ze nemen vooraf een nieuwe mri-scan. We hopen dan al iets te zien. ..
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Juliette Lumeau
8 months ago
2
2

The translation: "We are Stefanie Rotsaert and Samuël Vanhille from Assebroek, Bruges, Belgium. We have an 11-year-old daughter, Maithili. Our world collapsed when on August 11th our daughter was diagnosed with brain stem cancer. The cancer in question is pontine glioma, DIPG. This is a very rare tumour that occurs in 2 to 3 children in Belgium each year. This tumour can not be surgically removed as it is intertwined with all vital nerves. The prognosis given to us by the treating doctors is bad... In September, she underwent radiotherapy, 13x heavy dose, 3G. The therapy has ensured that the growth of the tumour has stopped and her last MRI scan from mid-November showed that the tumour is stable. However, this is only temporary; we know that unless something is done, it will soon begin to grow again and there will be nothing more that can be done medically here in Belgium. The growth of the tumour will begin to press on vital nerves, causing paralysis, difficulty swallowing, respiratory problems... Her condition is stable now, but nobody here in Belgium is able to help us any further and the situation looks hopeless. Over the world, research is being conducted in some places and doctors are getting close to finding a treatment. However, this takes time and before adequate treatment is found, 1 to 2 years will have passed. Unfortunately, we do not have that much time left. We did, however, find Prof. Dr. Van Gool Stefaan and have consulted him. Mr. Van Gool has been researching brain tumour immunotherapy for many years, including brain stem tumours. 15 months ago, he began the treatment of children with a brain stem tumour in Cologne. He started with 14 children similar to our daughter and 13 of them are still alive. We have contacted parents in the United States whose children received the same diagnosis and are already being treated by Dr. Van Gool in IOZK in Cologne. All their tumours are stable and no longer grow. We realize that the tumour is inoperable, but this immunotherapy can stop its growth. After consulting our health insurance, we were notified that if we go abroad in search of treatment, there will be no coverage. All medical costs are to be paid by ourselves. The costs in question are as high as 50,000 to 70,000 euros. Although we both have stable incomes, this sum is too heavy to carry and impossible for us to afford. For that reason, we started a fundraiser. In this way, we can give our 11 year old daughter a chance to save her life. If you know as a parent that there is a chance to save what is most precious in your life, you have to take it... We hope you agree and are able to support us. our eternal gratitude... Sam and Stefanie" Help spread the word!

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Simon Pedersen
11 months ago
2
2

Could you translate to English?

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€29,459 of €70,000 goal

Raised by 386 people in 13 months
Created January 1, 2017
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€50
Anonymous
19 days ago
FD
€100
Fam Decaluwe
20 days ago

We hebben uw artikel gelezen in de krant en hopen uw familie hiermee een beetje te steunen. We kennen Sam van zijn werk.

PG
€50
Peter Gheeraert
1 month ago

Van vrienden van je collega Annelies.

€100
Anonymous
1 month ago
1
1
JS
€250
Jhony Sorel
2 months ago

Moed, doorbijten, zusje ...

€40
Anonymous
2 months ago
VB
€50
Vincent van den Berg
3 months ago

Alle sterkte toegewenst

LV
€25
laurence vanraepenbusch
3 months ago

Veel moed en succes!! Laurence , Daniel , Manon en Flor

Juliette Lumeau
8 months ago
2
2

The translation: "We are Stefanie Rotsaert and Samuël Vanhille from Assebroek, Bruges, Belgium. We have an 11-year-old daughter, Maithili. Our world collapsed when on August 11th our daughter was diagnosed with brain stem cancer. The cancer in question is pontine glioma, DIPG. This is a very rare tumour that occurs in 2 to 3 children in Belgium each year. This tumour can not be surgically removed as it is intertwined with all vital nerves. The prognosis given to us by the treating doctors is bad... In September, she underwent radiotherapy, 13x heavy dose, 3G. The therapy has ensured that the growth of the tumour has stopped and her last MRI scan from mid-November showed that the tumour is stable. However, this is only temporary; we know that unless something is done, it will soon begin to grow again and there will be nothing more that can be done medically here in Belgium. The growth of the tumour will begin to press on vital nerves, causing paralysis, difficulty swallowing, respiratory problems... Her condition is stable now, but nobody here in Belgium is able to help us any further and the situation looks hopeless. Over the world, research is being conducted in some places and doctors are getting close to finding a treatment. However, this takes time and before adequate treatment is found, 1 to 2 years will have passed. Unfortunately, we do not have that much time left. We did, however, find Prof. Dr. Van Gool Stefaan and have consulted him. Mr. Van Gool has been researching brain tumour immunotherapy for many years, including brain stem tumours. 15 months ago, he began the treatment of children with a brain stem tumour in Cologne. He started with 14 children similar to our daughter and 13 of them are still alive. We have contacted parents in the United States whose children received the same diagnosis and are already being treated by Dr. Van Gool in IOZK in Cologne. All their tumours are stable and no longer grow. We realize that the tumour is inoperable, but this immunotherapy can stop its growth. After consulting our health insurance, we were notified that if we go abroad in search of treatment, there will be no coverage. All medical costs are to be paid by ourselves. The costs in question are as high as 50,000 to 70,000 euros. Although we both have stable incomes, this sum is too heavy to carry and impossible for us to afford. For that reason, we started a fundraiser. In this way, we can give our 11 year old daughter a chance to save her life. If you know as a parent that there is a chance to save what is most precious in your life, you have to take it... We hope you agree and are able to support us. our eternal gratitude... Sam and Stefanie" Help spread the word!

+ Read More
Simon Pedersen
11 months ago
2
2

Could you translate to English?

+ Read More
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