News

January 2024: After a year of preparations, Emilie finally has a date to go to Freiburg: February 26th she will be admitted to the university hospital.

May 2023: The Delft students Ivo, Ruben, Tim, Kay and Yvette rowed the ‘Ringvaart regatta’, a 100 km trip, with their rowing team ‘Op karakter’. They managed to collect more than 1200 euros for the Lichtgevend foundation! A major achievement.

December 2022: On December 1st, Emilie had another DSM (examination under anesthesia) at the AMC in Amsterdam. It was the 8th DSM. This time, however, with success: the leak has been found! It is located at level C6 (in the neck). The next step is to find out what can be done about this leak and the risks of the procedure.

July 2022: An article in the newspaper ‘Eindhovens Dagblad’ about Medical Crowdfunding. Lichtgevend Foundation is cited as a positive example (article in Dutch): https://www.ed.nl/eindhoven/eindhovense-emilie-heeft-gaatje-in-hersenvlies-je-bent-klaar-in-nederland-zeiden-ze~ae4956fd/

July 2022: The blood patch didn’t do what it supposed to do. It failed. An appointment with the neurologist is made to discuss further steps.

June 2022: Emilie tried another blood patch at the VU AMC in Amsterdam. Fingers crossed.

March 2022: Emilie had an appointment with the neurologist at the VU AMC in Amsterdam to discuss how to proceed. The next step is to try another blood patch. It will be planned.

August 2021: A friend of Emilie’s has arranged that Albert Heijn Strijp (Eindhoven) calls to donate deposit receipts to Lichtgevend Foundation.

July 2021: Emilie had her 7th DSM in the AMC. This DSM didn’t have a result. A CT scan, made afterwards, showed a possible leak. In August Emilie speaks to her neurologist to hear what this means and what the options are!

June 2021: Emilie had a DSM in the AMC (Amsterdam University Hospital). Unfortunately it failed.

January 2021:
On January 13 the final amount of the sponsored bike ride, almost €25.000, was transferred to the Lichtgevend Foundation. With this amount the percentage of the total amount needed increased from 13 to 30%.

December 2020:
On December 20, 4 friends, including Aart, Emilie’s son, cycled from Groningen to America in 16.5 hours to collect money for Emilie. At 1 am they arrived in America. The newspaper also mentioned this initiative (article in Dutch): https://www.ed.nl/eindhoven/vriendengroep-fietst-225-kilometer-op-een-dag-voor-ernstig-zieke-emilie~af2b357c2/

Emilie, Willem, Aart, Floris, Huub
In America!

November 2020:
The Lichtgevend Foundation launches a video for Sinterklaas. It’s a video with a call to take care for each other:

October 2020:
October 15 an article about Emilie, her crochet projects and the crowdfunding is published in the Eindhovens Dagblad (article in Dutch): https://www.ed.nl/eindhoven/zieke-emilie-verwerkt-eindhovense-iconen-in-kleed-het-leven-is-niet-voorbij~a24ed30c/

July 2020:
Cedars Sinai hospital reports the cost of the trajectory to close Emilie’s CSF Leak: $125.000,-

February 2020:
Emilie spoke to Dr. Schievink by phone. He sees opportunities to close the CSF leak. He is able to find (and operate) a CSF leak in 85% of the cases.