Bianca Castro

Sachse Boy With Rare Condition In Race Against Time

The family of a 5-year-old Sachse boy is asking for help to find a treatment for their son.

Declan Sink has a rare genetic condition called Sanfilippo Syndrome, also known as childhood Alzheimer's.

Patients are born with DNA mutation that causes am important enzyme to be made improperly or not at all. 

As a result, their body cannot breakdown and recycle natural cellular waste. 

Their cells become clogged with toxic levels of heparan sulfate. 

While every cell in the body is affected, brain cells suffer the most. 

Effects on the brain become apparent between 2-6 years of age and include speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. 

As they get a little older, the patients experience progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge. They lose the ability to eat for themselves and many will get a feeding tube.  

Children often pass away in their teenage years.  

Declan's parents, Kathy and John Sink, say since they refuse to sit back and watch the disease take away their son, they're raising money to go towards Cure Sanfilippo Foundation.

They hope to enroll Declan in a clinical trial of treatment that could improve his quality of life.

You can read more about Declan's story here.

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