Muskego family raises more than $500k for research for 6-year-old daughter's terminal disease 

MUSKEGO, Wis. (CBS 58) -- For Muskego parents Tyler and Erin Stoop, life is all about cherishing every moment with their children, Olivia and Liam.

"We want to make as many good memories with them together before Liv starts slowing down and isn’t able to play with him anymore," said Stoop.

At just two years old, their six-year-old daughter Liv was diagnosed with Sanfilippo Syndrome. It’s a rare and terminal disease described as childhood Alzheimer's.

"Our hearts were ripped out of our chests," said Stoop. "It was something you never envisioned happening. You've already built your family in your mind on what you think is going to happen and you're all going to grow old together and all of the sudden you are told that your child has an expiration date and it was the hardest day of my life."

The Stoops say as Liv continues to grow, her abilities continue to regress. So, what were major milestones, like learning to walk and hearing her daughter say I love you are being taken away.

"I sometimes get memories on my phone, flashbacks of a year or two ago and I see regression or how far she's stepped back from where she used to be and that’s really hard," said Stoop. 

Embracing every minute with the young girl they say is full of endless energy and love.

"Her giggle is so infectious and so yeah she just brings a lot of joy to our life," said Stoop.

Right now, there is no FDA treatment or cure for Sanfilippo Syndrome, but this family is not giving up.

"We are hopeful that Liv will be potentially able to get medication at some point that will help slow things down."

The Muskego community and beyond helping them turn their pain into progress.

"The community of Muskego came together, the school systems, churches, family, friends, strangers on the internet, everybody has contributed considerably," said Stoop.

Now, after more than three years of fundraising, the family has helped raise more than half a million dollars. All of those funds go towards finding treatments and a cure.

"There's definitely promising research on the horizon and our money along with a lot of other families that have raised money have helped fund a lot of these studies and a lot of these researchers," said Stoop.

Liv's impact goes beyond the fundraising. Spreading awareness through social media, this mother daughter duo has helped diagnose eight kids with Sanfilippo Syndrome or similar genetic disorders.

"I always say it's like two totally different stories where I'm very proud of it because she's helping others, but also she's apart of somebodies worst day of their lives."

Stoops posts sharing Liv's journey, while connecting with other families going through a similar experience so they know they are not alone.

"I think that’s been a real motivation for us, that we are making a positive impact," said Stoop. "You know even though this is in light of a very devastating diagnosis for our daughter."

With a long road ahead ,they are holding onto hope.

"A lot of things have progressed since Liv's diagnosis, so there is definitely light at the end of the tunnel, but there's still a lot of work to be done and a lot of money to be raised."

Continuing to do everything they can to help their daughter and other children with Sanfilippo Syndrome.

"We have to realize all of that isn’t going to happen overnight and if we take everything day by day and just love her as she is each day, we can make it to the next," said Erin Stoop.

The family's GoFundMe to can be found here.