Victoria boy with rare disease dies

Jessica Priest By Jessica Priest

Dec. 3, 2013 at 6:03 a.m.

A 4-year-old Victoria boy diagnosed with an incurable disease died Sunday morning but not before he felt the wind blow the strands of his curly hair one last time.

Stephen Shifferly died of congestive heart failure after he came down with pneumonia about a week ago, his mother, Amelia Forman said.

Stephen was diagnosed when he was 2 with an unspecified type of leukodystrophy, a rare, incurable disease that affects the brain and one's motor skills.

He has been a Hospice of South Texas patient for about a year.

Stephen's father is Ty Shifferly, of Rosenburg.

Recently, Stephen and his family were treated by a San Antonio nonprofit, Project Angel Fares, to a hotel stay and a trip to Morgan's Wonderland.

Morgan's Wonderland is a park for special needs children.

Volunteers were able to strap Stephen's wheelchair to a platform and swing him around.

"He loved that because that was something he always enjoyed doing before the illness," Forman said. "Once he started losing his upper body muscles and controls, it became fearful for him. ... That was our last big adventure with him."

For Halloween, he; his mother; his stepfather, Nathan Forman; and his 8-month-old stepbrother, Keegan, dressed as crayon boxes and crayons for a party at the Northside Baptist Church.

Stephen was the red crayon, while his brother was the blue crayon. Red was Stephen's favorite color.

On Sunday, he was surrounded by Hospice of South Texas doctors, nurses and loved ones.

"These are people who had to leave their own families to come take care of mine," Forman said. "I don't know where else you'll be able to find people like that. I really don't."

The experience, Forman said, has strengthened her faith. She is in the process of converting to Catholicism.

Forman will remain a stay-at-home mom and says she is more committed than ever to helping the Hospice of South Texas raise enough money to erect an inpatient center on 30 acres near Mallette Drive in 2014.

"We are currently at 85 percent of our Phase I goal of $5.25 million for the inpatient center," said Hilary Lucas, hospice's advancement director. "Our total capital campaign goal is $6.55 million, which also includes our memorial gardens, bereavement center and endowment."

Forman predicted that Christmas will be hard but is determined to make it a memorable one for Keegan. Every year, the family will add an ornament to the tree in honor of Stephen.

"He (Keegan) really motivates me to get out of bed in the morning right now. I have somebody else depending on me, and I know Stephen would not want us to quit," Forman said. "He was not a quitter. He never gave up."



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