A family’s battle with a rare disease

In 2017, Simone Braunsdorf-Kremer and her husband became aware of “Walking with Giants”. The British organization invests money in research and offers annual meetings where those affected can inform and exchange information. The Braunsdorf-Kremer family was there for the first time in 2018. The idea arose to set up a German headquarters because not every German-speaking person affected understands English. The German subsidiary association was founded in 2018 with family and friends and is chaired by Simone Braunsdorf-Kremer. The non-profit association “Walking with Giants Germany” is always looking for members, supporters and those affected. Simone Braunsdorf-Kremer makes it clear that she does not support her own family with club funds, even if this were possible. Because she doesn’t want to get into conflicts of interest. She is therefore happy about the help of the “Summerfield Kids Foundation” run by the Eschhöfen music producer Matthias Distel (“Ikke Hipgold”), which will in future pay the family a professional carer from the children’s hospice in Hachenburg twice a month, so that the couple can have peace of mind can leave the house together for a few hours without Jonathan. Because he has to take 19 medications regularly and always have to be closely monitored for health reasons, which is why grandparents or friends can’t just look after him for a few hours.