Evan Leishman

Born August 2012
Diagnosis - GM1 Gangliosidosis Type 2 (Late infantile/Juvenile)

Evan was born in August of 2012. He was a happy and healthy baby. He has progressed normally up to age 2. His balance didn't seem too bad when he began walking and he seemed to understand pretty normally. At age 2, he was behind in speech, only saying approximations for some single words, but he could say ending sounds to some words if they ended with a 'K' sound. We also began to notice that one of his eyes was crossing inwards and he preferred the stronger eye.

He was prescribed glasses then and at this time, age 2 3/4, his strabismus is getting much worse and he is scheduled for eye surgery. He can walk well, but does have some stability and balance issues that are becoming more apparent. I haven't noticed any kyphosis of the spine. His very active and and gets into everything! Since age 2, he hasnít learned any new sounds or words, but has learned a few signs. His speech has regressed a bit, in which it is harder to understand him, although his family usually knows what he is trying to say. He knows some signs, such as for cracker, more, cereal, milk and please and still seems to understand well. He squints a lot because of vision difficulties and seems to stare and pause more often than he used to. Nevertheless, he is doing really well and we cherish every moment! He will be 3 in August of 2015.

Evan is 3 1/2 now and doing well. His surgery last spring went well, his eyes seemed pretty straight, although now he has begun to prefer his stronger eye again and we are doing eye drops to dilate his strong eye regularly to help him use his weaker eye. He wears his glasses and helmet pretty much all the time now and does well with them. His balance is a bit worse and he has lost a few skills, such as some of his signs and words and ability to stack blocks, things like that. He is still very curious and active and we love him dearly.

Our Story

Last Updated: February 2016