(WWJ) Imagine this: Your beautiful baby girl stops hitting milestones.
When it happened to them, new parents Kelly and Kevin Kozole started an endless round of doctor visits, diagnoses that were actually misdiagnoses, tests upon test to figure out why baby Morgan wasn't talking or walking.
Finally, they got a letter that broke their hearts: Sweet Morgan had a mutation on the WDR45 gene that caused beta-propeller protein-associated neurodegeneration, known as BPAN. Extremely rare, some of the symptoms are similar to Parkinson's Disease, but BPAN strikes young children.
There are only 500 known cases in the world, and the family is raising funds to push for a cure: Donate to the cause HERE.
"I immediately googled it and could not believe what I was reading," mom Kelly Kozole wrote on a Facebook post. "I will never forget the excruciating things I learned."
There is no cure. The best advice doctors offered was to join the BPAN Facebook community for support. There, the family learned about the developmental delays, seizures, early onset dementia, dystonia and ultimately an early death that came with BPAN.
"How can a disease be so horrible to such helpless children?" Kelly Kozole wondered. They spent months numb and in tears. And then they decided to take action.
"I can do this. I’m going to cure BPAN," Kelly wrote on Facebook. She's started a fundraising campaign called 'Don't Forget Morgan,' with the goal of raising $3 million.
The fundraising campaign launches today.
"The thoughts of Morgan suffering an early, painful death were images that I could not erase from my brain. The diagnosis of BPAN meant Morgan would have ... (I) couldn’t believe that parts of Morgan’s body would contract uncontrollably and potentially so forcefully that bones could break. I was reading posts of other families with BPAN and the pain and anguish that these children were facing were almost too much for me to read."