I am Jenny Smolinski
a family member in a familial ALS family,
a family member of someone we've lost to ALS,
an ALS gene carrier,
living with ALS
Michigan
Parenting young kids with ALS adds another layer to an already difficult path of living with ALS, but every day I pray a treatment is discovered so no families have to go through this.
I am currently 43 but was diagnosed at age 35 in 2013 when my daughters were 1 and 4. I am a SOD1 familial ALS gene carrier and feared my daughters would not remember me since they were so young when I was diagnosed.
I am still here thankfully and fight every single day to see them grow up. I worry one or both of them will inherit my gene and this nightmare will continue for them. Parenting young kids with ALS adds another layer to an already difficult path of living with ALS, but every day I pray a treatment is discovered so no families have to go through this.
