Originally Posted by snuggly mama
My youngest daughter is 3 yrs. old and is diagnosed with Senior-Loken Syndrome, a very rare genetic disorder. Because of the syndrome, she was born blind, needed a kidney transplant @ 16 months, and has multiple other medical issues. She's had a g-tube for a while, though she does eat very well. I always tell people that she looks like a train wreck on paper, but she's really a sweet, adorable, bright little girl. I'm glad to know there are other moms like me out there, though I wish none of us had to deal with these issues.
I'm fairly new to mothering dot community, but was so happy to find a "tribe" of mamas with chronically ill children. My daughter Kajsa also has a G-tube & end stage renal failure. She will be receiving a kidney transplant sometime in the next couple of years. It's sometimes really hard to find someone who I can relate to. I can hardly wait to wade my way through this whole thread.