Community holds fundraisers to help 3-year-old with rare condition

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A 3-year-old Indianapolis boy is fighting for his life after he was recently diagnosed with two illnesses that have made him newly dependent on a Berlin Heart. The device will pump blood for his weakened heart for up to a year. Liam Sprague, 3, is not a heart transplant candidate because his body is too weak, but his parents said they are working towards that.

He is being cared for in a Cincinnati Hospital more than two hours from home. Now, loved ones and even strangers are organizing fundraisers to help support his family.

Carolynn Sprague spoke with Fox59 on FaceTime on Friday.

“I said from day one, I felt like it wasn’t his time, and I still very much feel that way,” said Carolynn Sprague, Liam’s mother.

The Berlin Heart, that is only partially implanted into the boy’s body, is expected to give his body time to strengthen.

“The masses are something called Castleman’s disease which is like an overgrowth of lymph nodes. It’s similar to Lymphoma, but It’s extremely rare from what we have been told. There are 10 documented pediatric cases ever, and no one has ever had Castleman’s in addition to restrictive cardiomyopathy,” said Sprague.

Family members and friends have been busy back in Indianapolis as the Sprague’s care for their son.

“By having these fundraisers it helps them survive and not have another thing to worry about because they have the most important thing to worry about,” said Garret Kintzel, Liam’s uncle.

Kintzel created a website where updates are posted:  If people want to donate to the family, they can donate at Donations in honor of the family can be made at Those donations do not benefit the family, however.

“We’re going to do a benefit August 24 at the Southport Masonic Lodge. We’re going to have bounce houses, face painters and more,” said Nettie Greulich, a close family friend.

The Sprague family is preparing to spend up to a year in the hospital if necessary. Liam’s parents admit they are in uncharted territory.

“Fortunately, there are not a lot of kids who need this, but the kids who need this, this is a life saving device,” said Dr. Randall Caldwell, Chief of Cardiology at Riley Hospital for Children at IU Health.

Dr. Caldwell is not involved in the Sprague case, but Riley has fitted patients with the device in recent years. He said it is used much more often in adults.

Sprague describes her son as loving and always upbeat.

“He said ‘Mommy’ the best he could with a tube in his throat,  and it just melts my heart. I know my baby is in there, and soon enough, he is going to be able to be awake,” she said.

A benefit account has also been set up called Love for Liam at the PNC Bank at 6912 Madison Avenue in Indianapolis.

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