BLOG 3 - A Personal Approach

 Blog 3: Parents of Sanfilippo 

Haidyn Fowler 

“She’s taught me so much, but definitely that it’s the little things in life that we take for granted the most,”  Says mom Carrie Fowler when talking about her daughter, Haidyn- who was diagnosed with Sanfilippo Syndrome in 2020. 

Haidyn's diagnosis started before she was a year old, and doctors originally told Carrie that she was developmentally delayed- then re-evaluated and given an autism diagnosis; doctor after doctor, Carrie was determined to find out the correct answers for her daughter- while in the middle of a global pandemic. 

Seemingly healthy at birth, Haidyn's mom was told multiple diagnoses for almost 5 years before it was discovered it was Sanflilippo Syndrome by her thick, coarse hair. 

The family continues to hold fundraisers and host other events to spread the message for Sanfillippo Syndrome, to spread awareness and hopes one day for a cure. (Ross, 2020)



Once a doctor commented on Haidyn's thick corse hair, Carrie knew to start her own research. Once all of the pieces of the puzzle fit; such as her speach regression, sleeping issues- she was diagnosed.

The doctors explained the diagnoses is not only uncurable, but is Alzheimer's or Dementia for children, with a typical lifespan of 12-20 years old. 

Haidyn slowly started loosing her ability to walk and talk around 7 years old. 
Her mother Carrie continues to share their life on social media to spread her message, showing Haidyn's sleep disrders and how they manage saftey in their household for her best interest. (Lefroy, 2022)

Carrie and Haidyn Fowler



Logan Pacl 

"Because Logan is older, the hardest part for us is knowing that our child is dying and there is nothing we can do to stop it." Explains Noelle Pacl, Logan's mom. 

17 year old Logan Pacl enjoys his days by jumping on the trampoline and listening to old school rock & roll such as Queen, The Eagles, and Freddie Mercury. 


Losing his speech at just 4 years old, he now communicates mainly with a Picture Exchange Communication System, or PECS. This early setback marked the beginning of a challenging journey for the Pacl family. 

Much like Haidyn's mother, a majority of their life is showed on social media, and the troubles that Sanfilippo Syndrome brings. (Pacl , 2023) 

His parents Noelle and William do their best to provide a wonderful life for Logan, knowing his lifespan has been cut short. These things inclde the beach, trampolines, fun television shows and more. 

At just 3 years old, Logan's parents had to accept that their child was diagnosed with an incurable disease. A year later, communication became less and less. By six, Logan had had multiple surgeries and a cord blood stem cell transplant to help his life become easier. (Genes, 2013)

They share a majority of their life on Tik Tok, bringing awareness to the life they have been introduced to live. 

Logan and Fam - Tik Tok


Sanfilippo Sydnrome does not only drastically affect the child in which is diagnosed, but creates an entire new life for the parents involved, who now are staying up nearly all night, or up and down all night, due to sleeping disorders- handling difficult behaviors such as aggression, and overall, begining to greive a child you haven't yet lost. 

Both Haidyn and Logan have slowly began to lose everything they once had, including communication and mobility, and have adapted to new schedules and routines due to new seizures and other unfortunate developmental loses. Cure Sanfilippo Foundation offers support for families, offering a new perspective for parents and sibilings. 



Citations: 

Ross, K. (2020). 5-year-old diagnosed with Sanfilippo syndrome amid pandemic | 11alive.com. https://www.11alive.com/article/news/health/coronavirus/how-one-family-is-dealing-with-an-unthinkable-diagnosis-in-quarantine/85-40d6f6b8-4bc8-4b6f-b412-7b7148479644

Lefroy, E. (2022, July 22). 7-year-old’s “childhood dementia” leaves her in constant pain, unable to speak. New York Post. https://nypost.com/2022/07/21/my-daughter-7-has-childhood-dementia-but-she-still-smiles-laughs-loves-life/

Pacl , N. (2023, March 3). Our story with Sanfilippo Syndrome: Logan Pacl family. Cure Sanfilippo Foundation | Accelerating discovery of a cure for Sanfilippo Syndrome. https://curesanfilippofoundation.org/meet-the-families/logan/

Genes, G. (2013, June 12). Logan Pacl, living with sanfilippo syndrome - global genes. https://globalgenes.org/blog/logan-pacl-living-with-sanfilippo-syndrome/

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