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Community rallies around boy, 2, facing heart surgery
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Community rallies around boy, 2, facing heart surgery




William Daniels seldom sits still.

He scoots on his bottom from one toy to the next, from a visitor’s cell phone to her car keys, from the front door to his bedroom. He toots on a whistle, throws it down and bangs on a toy keyboard. Always moving, that blond-headed 2-year-old.

Who would guess the little boy has a serious heart defect, but it becomes apparent when his mama, Jayme Daniels, tells him he can’t climb on an end table and removes him. He gets mad and fusses, like any toddler who can’t get his way, but his lips turn blue. Then his hands and feet turn a strange shade of purple, almost like a grape Kool-Aid stain.

William has tricuspid valve atresia. He has a single ventricle and basically runs off half a heart, his mother said. The result is an inadequate supply of blood going to his lungs.

Jayme and David Daniels knew about the heart defect early in her pregnancy. But it wasn’t until William was born at Duke University Medical Center — with a cardiac team standing by — that they learned William had Down syndrome as well.

Jayme Daniels knew the minute she saw the baby’s almond-shaped eyes.

 

HEART SURGERY

William will have his third heart surgery at Duke this morning. The ultimate goal of the three procedures is to bypass the right side of William’s heart so it can function with the left and to increase oxygenated blood flow.

Support Group

21 Friends, a support group for families, friends and supporters of individuals who have Down syndrome, meets at 10 a.m. on the third Saturdays of every month at First Presbyterian Church, 414 Sunset Road. For more information, visit the group’s Facebook page at www.facebook.com/21Friends or email twentyonefriends@gmail.com.
The first procedure was to insert a shunt to allow for extra blood flow when William was just 1 week old. At age 5 months, he had the second procedure. If things go as planned, today’s surgery will be the last. It won’t fix the birth defect, but it will allow William’s heart to work more efficiently in pumping blood to his lungs.

There were complications following the second surgery, and William ended up hospitalized for a month. Jayme Daniels said they have been warned to expect complications this time as well.

Down syndrome plays into William’s diagnosis and treatment. Congenital heart defects are much more likely in Down children, but his is a rare case. And, the fact that William has Down syndrome causes its own set of complications going into surgery. With Down syndrome, the patient has smaller and weaker airway passages, she said, and his doctors aren’t sure he can tolerate the surgery

A recent heart catheterization came back with good results, though, and William is at a good weight for the procedure, so the timing is right, Jayme Daniels said.

William is not restricted in his activities because of his heart defect, but his parents are mindful not to place the child in day care, where he would be exposed to communicable illnesses, and to keep him as healthy as possible for surgery.

Sometimes, when they are out in public, people will notice William’s blue lips and might ask if he’s had a blue lollipop recently. But his parents no longer get overly alarmed when those episodes happen.

"We’re more accustomed to it now, and we don’t think about it,” Jayme Daniels said.

 

21 FRIENDS SUPPORT GROUP

While the Danielses have had to concentrate on William’s heart defect, they also have to deal with their son’s challenges because of Down syndrome.

Developmentally, he’s doing well. He has speech, occupational, physical and play therapists who work with him to accomplish milestones.

He knows 30 to 35 American sign language signs and verbalizes some words.

On Wednesday morning, he scooted over to his mother, handed her a puppet, and gave the sign for "on.” Then he said, "On!”

Learning to sign early on decreases the frustration he would feel if he couldn’t communicate, Daniels said.

There are other challenges as well. William, who turned 2 in April, isn’t walking unassisted yet, but he does walk around the house, holding onto furniture.

It was important to Jayme Daniels to meet other families whose children have Down syndrome and special needs, and she connected with a local mom. She was a good resource for Jayme Daniels, but she wanted a larger network.

With assistance from William’s play therapist, Nicole Bryant, she started the support group 21 Friends. The name is in reference to the extra chromosome 21 that results in Down syndrome.

The group meets once a month at First Presbyterian Church. Sometimes four people show up, Daniels said, but other times there are 20 or more.

She said the group has been a wonderful experience for her having the connections with other Down parents.

"Unless you’ve been through it, you just don’t get it exactly,” she said.

Her church friends from First Baptist supply breakfast for the support group meetings.

Jayme Daniels said its important to her to be part of the Down syndrome community and to reach out. Through the support group, she is working to get literature on Down syndrome to smaller hospitals and physicians’ offices in small towns. She wants parents to have as much information as possible when they learn their child has Down syndrome.

"It’s a hard diagnosis when you’re not expecting it,” she said.

 

‘THE BEST GIFT’

Jayme and David were overwhelmed this week, when friends and strangers showed up on their front lawn to pray for William and his doctors in advance of his surgery.

Kristy Davis, who went to Fike High School with the couple, asked Facebook friends to "like” or comment on her Lights of Love for William page. She pledged to place a luminary along Nash Street where the family lives for everyone who responded.

Jayme Daniels said they couldn’t believe what they were seeing when they first looked at Facebook Sunday night when this all started.

"I was just blown away by the idea,” she said. "It was such a beautiful thing.”

It was emotional and touching to see more than 500 luminaries by their home as well as those people gathered to pray. She’s also appreciated the prayers left on Facebook.

It was wonderful to focus on that event, she said, instead of fretting about today’s surgery.

"It’s just been the best gift,” she said. "It’s been a distraction.”

 

A REGULAR KID

One of the hardest parts of William’s surgery is being away from her other two children, Jayme Daniels said. It’s hard to have the family apart.

Harper and James are "great” with their younger brother, she said, and they amaze her and her husband with their attitude. They are never jealous of the extra attention William gets from therapists.

And they are supportive.

"From the get-go, they have seen him as William, our new brother,” she said.

And that’s what she wants for William — for people to see him as a regular kid.

"Nothing to be afraid of, and nothing to be glorified.”

But William is special to many people. And the love people have shown him speaks volumes about Wilson. William’s sweet personality and friendliness have won him many friends.

"William has truly touched so many people in a short period of time,” she said, adding she’s not sure how or why. "But it does reaffirm that his life has purpose.”

 

lisa@wilsontimes.com | 265-7810
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Praying! said...

I have already lifted you all up in prayer and will continue to do so. God bless you!

Friday, May 03, 2013 at 7:08 AM
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