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Patients & Caregivers


When Marcus became ill and was diagnosed, the Petersen family was bewildered to find that there was no information available in the usual medical channels about their young child’s rare disease. They were shocked to learn that there were no specialists. Finding a doctor who had ever treated a patient was a desperate exercise. Even finding another family that also was affected by this disease was just as futile. So, they did what no one else had ever done. They devoted many, many evenings and nights creating the first-ever website in the world dedicated to lymphangiomatosis and Gorham’s disease — to share their story, and to help others similarly facing this dreaded children’s disease.

After meeting LGDA founder Jana Sheets, the Petersen family joined forces with the new organization and the launch of the first incarnation of was dedicated to Marcus Veng Petersen of Copenhagen, Denmark, son of Annette & Robert Petersen; brother to Helena.

Marcus Petersen died on September 7, 2004, just a few days short of his 8th birthday. While he was only here for a brief span, his footprint can be seen around the world. Though he is gone, he will always be a part of what we do in continuing the efforts to share our stories and to try to help others searching for information and finding doctors. He will always be a part of everything we do as we go forward to find treatments and cures for lymphangiomatosis and Gorham’s disease.

Our sincere thanks go to the Petersen family, and may God bless Marcus in his eternal rest. As we continue on this journey we shall always remember Marcus, and the many other gallant warriors lost in the battle.