Peter

[translated copy]

Dear dad,

I never knew you “healthy”. I know it from the photos, videos and stories from back then, but not from my own memories. A lot of people have still never heard of the muscle disease MD, even now, but I grew up with it.

For me it was completely normal that you were asleep when I got home from school, that you needed help getting up from a chair, and that you had to walk with a cane and still tripped regularly. While my vocabulary grew over the years, you became harder and harder for people who didn’t know you to understand. I saw the same problems in two of your older brothers, who both had the disease too.

As I got older, walking became completely impossible for you. It became more and more likely that I wouldn’t be able to dance with you at my own wedding. In four months it will happen – I’m getting married. But you won’t be there. You never even got to meet my husband-to-be, even though I know the two of you would have loved to watch plenty of Ajax matches together. After your brothers passed away, you yourself died of MD just over 6 years ago, at the age of 55.

You will also never know that you passed this hereditary muscle disease on to your only daughter. I got the result of the DNA test just over a year after you died, and that turned my life completely upside down too. I know what the slow decline looks like, but mum and you didn’t know that yet when you were just starting to make your wish for children come true. Fortunately there are now options to have children using embryo selection, which means doctors can now say with 95% certainty that MD stops with me in our family. My partner and I are also doing everything we can to raise money and spread awareness about the disease that affects so many families. So that MD will, in the end, only exist in memory.

Daarnaast zal je nooit weten dat je deze erfelijke spierziekte aan je enige dochter had doorgegeven. De uitslag van de DNA-test kreeg ik iets meer dan een jaar na jouw overlijden en dat heeft mijn leven ook compleet op zijn kop gezet. Ik weet hoe het langzaam verslechteren eruit ziet, maar dat wisten mama en jij nog niet toen jullie net begonnen met jullie kinderwens werkelijkheid maken. Gelukkig zijn er nu opties om kinderen te krijgen met behulp van embryoselectie, wat betekent dat ze nu met 95% zekerheid kunnen zeggen dat MD in onze familie stopt bij mij. Daarnaast doen mijn partner en ik er alles aan om geld in te zamelen en kennis te verspreiden over de ziekte die zoveel families beïnvloedt. Zodat de ziekte MD uiteindelijk alleen nog maar in de herinnering bestaat.