Reaching for a Cure


“I grew up playing with my brother and sisters without any trouble until 1997, when I was 9 years old and suffered a fracture on my left leg”


“It is getting easier to fight this battle with the help of the LGDA and now LGDAlliance-Europe and all the other people around the world that are working hard to create awareness about this disease.


“We were glad to have a diagnosis until we researched it and found that it’s so rare and that most of the information that we read was not very encouraging. Plus most of the doctors hadn’t even ever heard of the disease….that was the scariest part”.


“I will continue to pray for a medical champion to lead us in research, education and to direct us toward a cure.”


“. . It soon came to surface that I may in fact have this really rare and pretty much unheard of condition called Gorham’s disease. This was rather worrying, at first, since a definite “cure” of a “magic pill” to make it go away does not exist.”


“Doctors discovered a right plural effusion and, after several lung taps, a chest tube was placed. At first I was draining a liter and a half once a week, but it eventually became routine to drain my lung after dinner each night for over a month.”


“Dealing with a disease such as lymphangiomatosis/Gorham’s disease isn’t just difficult on the person with the disease, but also family.”


“It affected me in so many ways. I missed out on most of my childhood and teenage years because of all the time I had to spend in hospital.”


“If this disease has taught us one thing it is to live for now because you never know what will happen tomorrow.”


“I was sent for a routine x-ray. The technician came out from behind the wall with an ashen look. “How much pain are you in?” she asked as tears backed up in her eyes.”


“The uncertainty of her future is the hardest thing to deal with. Her disease is currently progressing very slowly, but it is progressing.”


“I know everyone has a unique trajectory with this nasty disease. My heart goes out especially to the little ones who can’t understand what is happening with their bodies. But, I am living proof that one can lead a good quality of life despite having GLA. For that, I’m abundantly grateful.”


“This illness is forever, but define me it does not. We are in this together; they will remember how we fought”


“It was a summer morning when I was 7 years old when a sudden abdominal pain forced me to transfer to the hospital…”


“Having a diagnosis, of course, is better than not having one, but learning pretty much all my medical problems could be tied together in a bow called Gorham-Stout disease left me with more questions than answers.”


I hope that my story will encourage people to donate money and support research. It is for kids like me, so that kids can stay strong for the good times to come with our family and friends.”