As wife and children of Eric Koning, we want to share with other patients/family members our experiences over recent years. Eric carried the rare condition McLeod/XK disease. He passed away on the 14^th of December 2023 at age of 70 years old, in Zeist, The Netherlands.

Eric was a very independent person with a strong character. He dealt with his condition in such a brave and courageous way that resulted in a lot of respect from friends and family alike. Despite the difficulties his condition presented (such as restless legs, general unrest, chorea, spasms, muscle weakness, bruxism, sleeping problems etc.) he never complained and always had a positive attitude towards life. Nevertheless, he really felt isolated in his situation and unfortunately we were not able to find other McLeod patients in The Netherlands.

We really believe Eric’s condition would have deteriorated far quicker had he not had such an active lifestyle. He made sure he was active every single day, walking behind his walker and/or cycling on his tricycle e-bike. He also found other ways such as Qigong enabling him to focus on body and mind which gave him energy. Meditative music and meditation helped him to find rest in his life and to aid him in sleeping.

Unfortunately, we decided to find a nursing home (for Huntington patients) since Eric’s deteriorating condition became unmanageable at home. This was a difficult decision for the whole family, despite the excellent and appropriate expertise in this nursing home.

We have been able to complete Eric’s last wish to contribute his brain tissues for systematic study into McLeod/XK disease.

Eric will be terribly missed, however, he left us with a valuable lesson of how we should all live our lives to the fullest, in whatever time we have been given.

        - Madelon (wife), Elout (son) and Marcelline (daughter).