We want to introduce to you CDH International’s Denmark Ambassador, Rikke Hammer. Rikke is the mom to cherub Milton.
Written by Rikke, “I’m married to Mark Hammer and we live in Denmark, Europe. We have a son, Milton with CDH who is now 6 years old and about to start school.
I have a degree in in medicine (I’m not a licensed doctor though) but I’ve used my knowledge to run a Danish NGO for people with Ehlers-Danlos Syndrome1, which I have my self. This has given me a solid understanding of the Danish healthcare system and a good, strong network. There are no similarities between EDS and CDH and yet the problems you face in the healthcare system being a “rare condition” are the same, and it’s often that the care staffs I see have never seen a case like mine or Milton’s before. You quickly become your own doctor, nurse, consultant and expert on your own disorder, oversizing professional care staff in knowledge. You very much need a network to consult, to ask questions, to assist and to support you in your medical and everyday life.
When we first learned that we were having a CDH baby, I used all my medical knowledge and network to try to get my head around it. And to my disappointment, I couldn’t find any other family in Denmark to talk to, and I often got conflicting information about CDH. I did however find CHERUBS who has helped us to get the all facts and statistics about CDH and additionally a network of lots of other families to lean upon. This has been priceless as Denmark is a very small country with only 5,7 million inhabitants. Doctors only see about 6 CDH cases a year and therefor don’t have lots of hands on experience.
Now, as a mother to a child with CDH, I again had to study a new diagnose and get acquainted with all that it involves. Milton was an insanely severe case with only 10% survivor chance, and he has had his challenges growing up. His stomach acts up from time to time, and he still need oxygen and antibiotics at home as a backup when the flue or cold comes around.
I’m looking forward to be that family I couldn’t find myself, when I needed someone to talk to. To be the link to CHERUBS who can provide extra support, information, knowledge, experience and a large worldwide network. To be the one who truly understands and has been on the roller coaster ride them self. To just be there, listening.”
