Rallying to give Channing a fighting chance

By Kelcy Dolan
Posted 8/23/16

When Jenna Heiss discovered her unborn son, Channing, had spina bifida at only 19 weeks, she traveled to Philadelphia, Pennsylvania to ensure her son had the best life possible. At 23 weeks Jenna and Channing underwent fetal surgery to

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Rallying to give Channing a fighting chance

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When Jenna Heiss discovered her unborn son, Channing, had spina bifida at only 19 weeks, she traveled to Philadelphia, Pennsylvania to ensure her son had the best life possible.

At 23 weeks Jenna and Channing underwent fetal surgery to close Channing’s spine at The Children’s Hospital of Philadelphia(CHOP). Nonetheless, when Channing was delivered at 32 weeks, he had a long journey ahead of him. Although he had undergone in utero surgery, the spina bifida has led to hydrocephalus, a chiari malformation II, and hip dysplasia.

Channing, now 18 months, received a second surgery this past February for a dermoid cyst and tethered cord, from which he is still recovering. He suffers from permanent nerve damage and is physically weak, although there is hope that with extensive physical therapy Channing may walk on his own one day. Channing attends physical therapy at Hasbro Children’s hospital five times a week and occupational therapy once a week. He also visits the Boston Children’s Hospital spina bifida clinic twice a month and CHOP once a year. With the increasing severity of Channing’s orthopedic concerns, Jenna hopes to save up for another advanced surgery at CHOP later this year.

Because of the high costs for Channing’s care as well as his body braces and expensive mobility equipment, such as child wheelchairs and walkers, many of which are not covered by insurance, Jenna hosted a Funny 4 Funds fundraiser this weekend at the Elks lodge.

“Caring for Channing is a full-time job,” Jenna, said. “We do strength training every day. All of his issues are physical with his mobility. He still struggles to crawl without help. We live month to month with this condition.”

Despite his physical ailments, Channing is mentally strong and loves to socialize. Jenna noted that most people assume spina bifida leads to some mental impairments, but that is not always the case and isn’t with Channing.

“Everyone who meets him loves him. This fundraiser will be good for him because he will see how many people care about him. He will feel loved and like a little celebrity,” Jenna said last week.

Jenna explained that in planning for the fundraiser and throughout Channing’s life, “strangers have become friends” and when her own family is small and Channing’s father isn’t involved, it’s “heartwarming” to have established such a caring network of support within the community.

Jenna said, “It has been such a blessing. Channing is going to need support like this his whole life and he deserves it for all he has gone through. I am so grateful for everyone we have met through this journey.”

The Funny 4 Funds show was able to raise $7,000 to put towards mobility equipment and a possible surgery this fall.

For more information on Channing’s story or to donate if you are unable to attend the fundraiser visit their Gofundme page, www.gofundme.com/channingneeds.

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