‘He reminds me every day to choose joy’: Quincy woman helping son with lissencephaly beat expectations

QUINCY — Elijah Tarpein is much like many kids his age. At 3 1/2 years old, he wants a puppy, likes peanut butter milkshakes and enjoys watching YouTube videos.

“He lives a life full of joy,” said Amy 

Elijah also is much different than many kids his age. He was diagnosed at birth with lissencephaly, a rare terminal condition that causes a child’s brain to develop the wrong way during pregnancy, according to WebMD.com. Children with lissencephaly often have difficulty swallowing and often die from aspiration.

No cure exists for the condition. Doctors told Elijah’s mother, Amy Tarpein, he wouldn’t progress developmentally past two to three months.

“He has exceeded every expectation they’ve set forth for him,” Amy said. “He’s just busting through glass roofs all the time.”

Bayview Bridge lights to be purple Wednesday night

Tarpein was in the City Council chambers on Wednesday to receive a proclamation from Quincy Mayor Mike Troup declaring Sept. 8 as Lissencephaly Awareness Day. The lights on the Bayview Bridge in Quincy will be purple Wednesday night to pay tribute. The number 8 represents both hemispheres of the brain, and purple represents epilepsy.

Amy originally is from Hamilton but moved to Quincy two years ago for better medical access for her son. Amy and one of her daughters — one of her 10 children — do therapy with Elijah three times a day.

“(Lissencephaly) is all he’s ever known,” Amy said. “He wakes up in the morning and spends his days with his siblings and myself, cuddling and watching whatever he wants to watch, because he’s the boss in our house. We finally have some of the equipment we need for Elijah to do his therapy and be able to thrive.”

Elijah also thrives through the creation of Elijah’s Baby Bucket List, a Facebook page that provides awareness for Lissencephely and opportunities to live his life to the fullest.

“When I found out that Elijah was terminally ill, he was eight months old,” Amy said. “It was three years ago, and I was a single mom at the time. I put the six kids I had at the time in the car, and we drove 13 hours so my kids would be baptized in the ocean. That’s where Elijah’s Baby Bucket List was born. We decided that we were going to give him the best God-filled life that we could.”

Filling Elijah’s Baby Bucket List

Elijah has met Allie Toepperwein, a participant on the “American Ninja Warrior” television show on NBC. He saw massive Transformers during a trip to Oklahoma. He’s visited science centers, science museums, natural history museums and art museums. He also watched a meteor shower with a NASA scientist. PGA Tour golfer Cameron Tringale recently invited the family to California. Amy works for Tringale’s mother, Robin. 

The National Organization for Rare Disorders says the overall incidence of lissencephaly is estimated around 1.2 per 100,000 births.

“I had a bigger chance of winning the lottery than having a child with lissencephaly,” Amy said. “I feel like I won the lottery, because I get to be his mama. He reminds me every day to choose joy and to live in the moment.”

To learn more about Elijah, visit his website or go to his Facebook page or his YouTube page by searching for Elijah’s Baby Bucket List.