Jennifer Rice died this month at the age of 24, outliving many doctors' predictions by more than two decades.
Despite facing many obstacles, including being unable to speak and suffering a form of cerebral palsy, her parents said she enjoyed life, and inspired them to campaign for better treatment for severely disabled youngsters in the Lothians.
Her parents, Dave, 60, and Fiona, 65, said they were told by some experts that their daughter could expect little quality of life, while some even expected her to die within weeks of her birth.
Instead, Jennifer, from Kirknewton, West Lothian, did not let her disability stop her from embarking on adventure holidays, going to gigs, playing the drums and quad-biking.
Mr Rice said: "Jennifer was born with a pretty profound handicap. She could never walk and she didn't communicate by talking but she invented her own way of communicating."
He added: "When Jennifer was diagnosed we had no help at all. We set out to change that, and I hope we helped."
At Douglas House, a former Sick Kids hospital facility, Mr Rice and other parents pushed for the creation of a purpose-built centre, which resulted in Sunndach in Livingston and a centre in east Edinburgh. They also raised 50,000 to buy a holiday home near Aviemore for youngsters.
Mr Rice said: "The longer she lived, the better she did but I remember reconciling myself when Jennifer was small that she wouldn't live beyond 12 or 13. It's strange to look back on that, and it's made the last few weeks harder. We had almost got used to the idea of Jennifer's chances being better than they were.
"At first we just enjoyed cuddling, playing, Christmas, birthday. Then, to our joy, we were able to enjoy so much more in her later years.
"People who were born when she was could expect little quality of life. We hope we've changed that somewhat in the campaigning we've done.
He added: "While we had her, every minute was wonderful, and we'll never forget her."