Loneliness broken by ISMRD family

Family Conference
Personal Reflections

Scientific Conference
Children and Youth Program

To the ISMRD family,

There are no words to depict, distinguish, draw, identify, or even describe the help that ISMRD facilitated for me. You have no idea the place of loneliness I felt with this disease. And no, I am not talking self-loneliness because I feel loved by family, friends, and especially my wife everyday. However, to know that you had the mobility to do whatever you pleased and for it to be vanished from you without knowing why or the reason, it is sadly heartbreaking. What was even more heartbreaking, not only did people not know of the disease in my circle of doctors but they didn’t care to do much about it.

I actually started losing hope and started accepting the fate I would face in the upcoming years. Even if that meant me being disabled from head to toe, losing my vision, or even worse. I was starting to accept my fate and accept what God would present me in life. I hate comparing diseases cause none are the same. But if I can make a comparison some days and some nights I felt like I had stage four cancer and was just waiting the the day. I had really reached that point.

However, ISMRD made me feel like I had HOPE. ISMRD made me feel not alone anymore. ISMRD made me feel I had another family, and with that, I honor that with great gratitude. And with that great gratitude, I am taking a new approach. I will fight this disease to the bitter end. I will not let it defeat me, destroy me, or put me down. I will now only rise to the occasion knowing I am truly blessed. More importantly, I feel like I need to fight this disease for all the other families suffering from this rare disease. I think it all starts with one person and I feel like now, why cant that one person be me.

ISMRD you are truly a blessing and you have no idea how much. From the ISMRD board, researchers, doctors, and the families suffering – YOU ARE INCREDIBLE. I BOW DOWN AND APPLAUD YOU FOR EVERYTHING YOU HAVE DONE!

Smith Lambertson – Sialidosis affected adult.