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Lucas Hembree dies; community rallied to support boy in long battle with Sanfilippo syndrome

A terminally ill 13-year-old Blount County boy, Lucas Hembree, died at 3:30 a.m. Tuesday after a decade-long battle with Sanfilippo syndrome.

LOUISVILLE, Tenn. — The family of Lucas Hembree announced the 13-year-old died at 3:30 a.m. Tuesday morning.  The Blount County boy inspired the community that supported him during a decade-long battle with Sanfilippo syndrome, a rare terminal illness often described in layman's terms as childhood Alzheimer's.

More than 36,000 people followed the Hembree family's journey on the Facebook group "Prayers for Lucas."

The boy's father, Chester Hembree, posted Tuesday morning, "My heart is broken. On 04-28-20 at 3:30 am the Lord called Lucas Lee Hembree home to his eternal embrace. Lucas unfurled his beautiful new set of wings. He is no longer in any pain and is now able to run, talk, sing, and do all the things he wasn't able to do while here. Please keep our family in your prayers that we will have comfort. We will post information on arrangements as they are made."

Credit: WBIR
Lucas Hembree turned 13 years old on March 2.

Lucas Hembree received a fatal diagnosis at the age of three.  A genetic disorder called Sanfilippo syndrome was already in an advanced state, so doctors believed he may live until he was 10 years old.  Lucas endured several years beyond his predicted demise.

On March 2, 2020, the community helped Lucas celebrate becoming a teenager.  The Hembrees asked the public to send cards to Lucas to make his final birthday special.  The boy received more than 5,000 cards from across the country.

In addition to the cards, several local groups organized a weekend of celebration. First responders and law enforcement agencies paraded through the Hembrees' driveway.  The Knox County K-9 unit delivered birthday cards.  Bands played music in the yard.  Bakeries donated custom-made birthday cakes. Entertainers dressed as characters from The Avengers showed up in full costume.

RELATED: March 2, 2020 - Happy Birthday, Lucas! Blount County first responders celebrate terminally ill boy's 13th birthday

Many people in East Tennessee know the story of Lucas and his service dog Juno. Juno was a rescue from the Tri-Cities saved by the Hembrees on the day he was scheduled to be euthanized.  Juno worked as Lucas's service animal until his death in December.

Lucas Hembree was invited to enjoy many exceptional experiences after his terminal diagnosis, including an invitation to throw out the first pitch at a Tennessee Smokies baseball game.

Credit: WBIR
Chester Hembree shows his son Lucas a birthday card prior to his 13th birthday

When thieves stole a generator from the Hembree home in 2012, the community rallied and donated a new machine to ensure he would have vital electric power for his medical equipment during a power outage.

RELATED: Aug. 10, 2012 - Additional donations help secure the Hembrees' peace of mind