2009 was the first year we found ourselves in a hospital because of a glioblastoma multiforme. It occured in our youngest daughter who was 7 at the time. When this reoccured in 2010 both daughters were examined for neurofibramatosis type 1. Results came back negative. Another year passed and the same tumor returned in our other daughter at 12 years old. Just months after this we heard that our youngest daughter had a glioblastoma for the third time. New blood tests finally showed a diagnosis; both our daughters have CMMRD.
Our youngest daughter developed a T cel non-hodgekin Lymphoma after her third brain tumor and passed away in August of 2012.
In 2014 her first colonoscopy revealed that our oldest daughter had an adenome in her colon and it was removed. This is closely followed by various other adenomes in 2015. In 2016 at age 18 she had to be tested on a Helicobacter Pylori bacteria but instead of that they found an esophagus carcinoma. She was treated with chemoradiation and surgery.
In 2017 they found coloncancer and her colon was removed. In 2018 an MRI showed a large Glioblastoma and during surgery it was almost complete removed. 4 Weeks after surgery an other MRI showed the glioblastoma had grown back larger and more capricious than before and 2 weeks later she died.
In the past years we have been through a lot, from brain tumors to non-hodgekin lymphoma, from colon cancer to esophageal cancer. All of that just because of a little mistake in our genes.
We are here to help people find more information on this rare and incurable disease so that together, we will generate more awareness.