The story of Jami
I was the first in the family diagnosed correctly with HSP at age of 12 but showed signs at 5 my maternal grandmother was told she had polio which was not true and my mom started showing signs in high school and was not diagnosed and then I came along and with the push from my father I was taken to Vanderbilt in Tennessee where I was diagnosed and my daughter had gene testing at age 10 and showed spg3. Hereditary spastic paraplegia is a spinal cord disease that weakens the muscles and is a progressive disease our lower limbs are spastic and weak,
It affects us all differently. There are currently 25 different types of HSP and all are different. It makes it hard to walk and usually ends up walking with assistance or wheel chair bound, we have a very different awkward gait and tire very easy. I have always fought this disease and “shined” through it, I do not let it define me, I know if I give in I will weaken more. I walk with a cane and so does my mom and daughter. Physical therapy and spastic medications is the only treatments. I walked unassisted until about 30 but use a cane full time now! I choose to shine my light for Jesus because I feel he gave me this thorn in my side to inspire others and to show determination. I do pray for a cure and that my granddaughter will not be affected and this generational disease will be broken and stopped with her! A cure is coming, I will keep fighting this disease and all the complications and obstacles that this brings!