On February the 2nd 2018 Kasper and I became parents for the very first time. A beautiful little girl, Emma, with a lot of hair.
When Emma was 3 months she was diagnosed with Schinzel-Giedion Syndrome. We had no idea what that meant for Emma and for us. The doctors could not tell us very much because the syndrome is so rare and everything that they could tell us was heart breaking. So I started searching online for answers and found another mom on Facebook who had a girl with SGS. I was so desperate to know about the life we had in store and how we could care for Emma in the best way, and it felt comforting to meet another mom in the exact same situation as me.
Being a mom of a special needs child is overwhelming at times and to me what has made the biggest difference is the community of other SGS parents. That is the main reason I joined the Foundation as a Trustee – I wanted to provide that same sense of comfort for new SGS families.
Emma struggles with a lot: daily seizures, bladder issues, narrow airways and feeding problems, but despite all of her challenges she is a happy little girl, who loves to take bubble baths, loves to feel the wind on her face when we go for walks and enjoys eating Nutella.
Emma has a younger brother called Adam and we live in Denmark, in a relatively small town called Holbæk. From my previous jobs I have had experience with managing social media and fundraising, as I use to work for a cosmetics company with a strong charitable profile. I am so happy to be a part of the important work done by this Foundation.
My dream is that everything that Emma and we as a family go through, will have purpose and value to future families.
Board of Trustees
Our Board of Trustees
Our Trustees are all parents of children with Schinzel-Giedion Syndrome. We are all volunteers, passionately driven to raise awareness and improve the lives of children born with this rare genetic disorder.
Founder and Chair of Trustees
Policy Making & Research
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