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HideSeekFoundation 
My personal involvement with Lysosomal Disease as the Director of Family Services
Sunday, September 7, 2008 |
Sunday, September 7, 2008 |
My story begins quite some time ago, actually in 2001 when I learned that my son was diagnosed with Sandhoff Disease - a type of Lysosomal Storage Disease. There was no cure for his disease, and I knew nothing about what his disease was. I searched the internet for help, advise, answers and suggestions for anything that I could do for him. My results were very limited and I felt so alone. We treated our son like he was always going to live and never treated him like he was dying, though infact he was. We as parents hold onto some hope - that the prognosis is wrong. I am no different then any other parent out there, I just wanted something to help with - anything. We fought long and hard and I learned along the way that I must accept what was in his future and ours. I learned as much as I could about Lysosomal Disease, and the many different types. I started mentoring other family's whom were just beginning their journey. My son grew weaker and his life was quickly coming to the end here on earth. I grew sadder that there was nothing in my power I could do for him on my own. Conner's battle ended in March of 2004 when he was just 3 years and 11 1/2 months old. Since he has flown away to heaven my life goals have reached new direction. I now focus everything I have to raise awareness, educate the medical communities and the public, and look into the future when Lysosomal Disease is cured. I have recently joined the Hide and Seek Foundation as their Director of Family Services and am honored to have done so. The Hide and Seek Foundation is the most well rounded organization I have found that is not focused on just one type of Lyso disease, but them all. They are truly dedicated to the children, teens and adults affected - and will fight with all they have to beat this disease. I myself am dedicated to all of the above and dedicated to helping the families out there that need it. I will always be here for them, in any and every way I can be. I look forward to meeting many familys - those affected, and those in between.
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