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Tears for RJ
By PAT JENKINS
The last few weeks, motherhood has been harder than Nicole Juntuneg and Kathy Zumwalt ever imagined.
Nicoles 3-month-old son has spinal muscular atrophy. He has two weeks to live, doctors told the family last week.
Thats hard to take. Its too much to accept, said Zumwalt, his grandmother, through the tears she sheds for a life cut short and her daughters pain.
Ronald Duane Williams Jr. (Thats so formal. I call him RJ, said Zumwalt) was born Feb. 17. About a month ago, he woke up one morning with what seemed like a bad cold. He wound up at Mary Bridge Childrens Hospital in Tacoma, where he spent three weeks before being sent home to live out the rest of his days.
Spinal muscular atrophy (SMA) attacks cells in the spinal cord, affecting the voluntary muscles for crawling, walking, head and neck control and swallowing. RJs case is a Type 1, the most severe and usually diagnosed in children in their first three months of life.
Although hes connected to oxygen and a feeding tube, outwardly he seems fine. He coos and smiles. But you look in his eyes they tell a story, Zumwalt said.
Zumwalt, Nicole, RJ, his sister and his father, Ron Williams, share an apartment in Federal Way along with another of Zumwalts daughters, whos 17. They had a visitor Thursday a priest from St. Theresas Church, who baptized RJ. The tyke is too frail to go to the church, but the family was looking forward to dressing RJ real cute for the occasion, Williams said.
Fellow parishioners at St. Theresas have told Zumwalt theyre praying for her family, and every now and then a bag of groceries is at our door from the church, she related.
Support also has come from the Red Robin restaurant in Federal Way, where Nicole is a waitress. Through a corporate program that benefits employees in times of personal need, money has been donated by co-workers to help Nicole and her family, including paying rent one month because Kathy, a waitress at Twin Lakes Golf and Country Club, had taken a week off to help care for RJ.
This is a very difficult time for Nicole. Our team members have rallied to support her as best we can, said Paul Galvin, the restaurants general manager.
Williams said the family wanted a newspaper to tell RJs story to raise awareness of SMA and maybe help somebody else whose kids might have it, or help them know more about it.
He said that after his son passes, we want to put on a party to raise money for SMA research.
Nicole and Williams are carriers of SMA. Their 3-year-old daughter apparently is fine, even though theres a 1-in-4 chance of a child getting the disease when both parents have it, Zumwalt said.
She said Nicole, 22, isnt ready to talk about her sons condition.
But Im so impressed by my daughter, Zumwalt said. Shes been so strong. I just wish, there was something more I could do. But there isnt.
Editor Pat Jenkins: 925-5565, firstname.lastname@example.org