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01-02-2022

Long live William

William, the little son of Marie and Dennis was born in March 2021 but may not live to see his third birthday.

In September 2021 they received very bad news, William appeared to have incurable Menkes syndrome. Menkes syndrome is a very rare and serious metabolic disease in which the body cannot properly extract copper from food, causing a shortage of copper in the body. This deficiency causes a wide range of different symptoms such as underweight, sometimes certain external features, epilepsy, problems with development and many more. Most children with this syndrome live 18 - 36 months.

But there is hope. In America, they have been researching Elesclemol, a drug that would ensure that copper is transported to all the places in the body where it is needed, for years. Since January 2022, this medicine has been tested on a Spanish boy. This treatment is succeeding and William can also receive this treatment. Because of this treatment William has the chance to become older than 3 years and to have a "normal" life with further development. However, this treatment costs 100,000 euros and that is why William asks for help.

Linum Charity has already supported but an SMS action has also been set up. All information can be found on www.langlevewilliam.be.


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