Sanfilippo syndrome is a terminal MPS disorder. Bremerton mom Noelle Pacl is raising awareness about the disease just in time for National MPS awareness day.
Silverdale mom uses TikTok to bring awareness to her son s rare disease
13-year-old Logan has Sanfilippo Syndrome, and his mom shares their life on TikTok in hopes that more awareness will bring a cure. #newdaynw Author: Suzie Wiley, New Day Northwest Published: 12:10 PM PDT May 13, 2021 Updated: 12:30 PM PDT May 13, 2021
SEATTLE Silverdale mom Noelle Pacl is a rockstar in our minds. Her son Logan has a rare and fatal disease called MPS III also known as Sanfilippo Syndrome. Sanfilippo Syndrome has no treatment or cure. The life expectancy for Sanfilippo Syndrome is mid to late teens. Logan is 13 years old and doing amazing.
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Subscriber only In March, Louise Jessop and her family celebrated her eldest son s 18th birthday, a milestone he never reached. At two and half years old, Dylan Jessop was diagnosed with Sanfilippo Syndrome, a condition which affects the brain and is one of a group of conditions sometimes known as childhood dementia. Dylan sadly passed away in July 2015 at just 12 years old. You never get over it, Mrs Jessop said. We just had in March what would have been his 18th birthday. Mrs Jessop is speaking about her loss to raise awareness for her son s condition. She said it was emotional to pass the milestones that Dylan had missed out on.
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Subscriber only In March, Louise Jessop and her family celebrated her eldest son s 18th birthday, a milestone he never reached. At two and half years old, Dylan Jessop was diagnosed with Sanfilippo Syndrome, a condition which affects the brain and is one of a group of conditions sometimes known as childhood dementia. Dylan sadly passed away in July 2015 at just 12 years old. You never get over it, Mrs Jessop said. We just had in March what would have been his 18th birthday. Mrs Jessop is speaking about her loss to raise awareness for her son s condition. She said it was emotional to pass the milestones that Dylan had missed out on.