Logan Pacl, Living with Sanfilippo Syndrome

June 12, 2013

My son, Logan, has Sanfilippo syndrome, a rare disease that could take his life before he turns 20. Logan loves playing at the park and watching Wow! Wow! Wubbzy! on Nick Jr.

He is only six years old and has already had multiple surgeries and a cord blood stem cell transplant to help make his life easier.
When Logan was diagnosed, we were told there was nothing we could do, there was no treatment or cure. We searched for something and came across the cord blood stem cell transplant.

It was a difficult decision to make. He could get this risky procedure and possibly have a better life or not get it and let Sanfilippo syndrome take him. We felt it was our only option, we had to try something to help Logan. We are not a 100 percent sure what the transplant will do for Logan, but some studies have shown that it may help with the physical symptoms of Sanfilippo syndrome.

We hope that one day parents won’t have to make decisions like this for their children. We hope that if their child is diagnosed with a rare disease, there will be a cure.

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