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Family paves the way for spina bifida research

April 22, 2012
by SHAUNNA DUNDER HERSHBERGER - Lifestyles Editor (sdunder@timesleaderonline.com) , Times Leader

"Ava will walk!" Jessica McCulloch of Roseville, Ohio (a small town 10 miles south of Zanesville), said confidently.

For most parents with a small child, watching them walk is a typical rite of passage that often begins well before his or her first birthday. McCulloch's daughter, Ava, on the other hand, is not a typical three-and-a-half year old. Ava was born with spina bifida.

Spina bifida is a birth defect involving incomplete closure of the spine. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. Sometimes, a newborn may have a sac sticking out of the mid to lower back. Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord.

Article Photos

Photo provided
This photo shows Jessica McCulloch with her daughter, Ava, while Ava received one of six stem cell treatments in China last year.

Children with spina bifida face symptoms like loss of bladder or bowel control; partial or complete lack of sensation; partial or complete paralysis of the legs; weakness of the hips, legs, or feet; abnormal feet or legs, such as clubfoot; and a build up of fluid inside the skull (hydrocephalus).

In Ava's case, the spina bifida affected her with partial vocal chord paralysis, bladder problems that require catheterization and medicine, and an abnormality with her cerebellum, a part of her brain, called an Arnold Chiari II malformation. With this defect, the back portion of the brain is displaced from the back of the skull down into the upper neck, which in turn causes hydrocephalus because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid, causing an excess of the fluid to accumulate. In addition, she's walking with the aid of ankle braces and a walker but is unable to walk on her own.

Ava's mom, Jessica, says that even though doctors told her that this will be a lifelong condition, Ava is making progress. For instance, the vocal chord paralysis required Ava to use a trach tube. It was removed after nine months - which, according to her mom, was record time as compared to other children. "We are fighting against this. We love Ava and want the best for her. She is such a beautiful, happy, intelligent little girl. Anyone who meets her instantly falls in love with her. We believe that God can and will heal Ava, and we have already seen healing in her body. She does things doctors and therapists said she would not do."

One day in December 2010 while doing Internet research, Jessica read about the use of adult (non-embryonic) stem cells. While there is no cure for spina bifida, stem cells have the potential to cure diseases including spina bifida, because they can repair damaged tissue. Curious, Jessica continued her research and spoke to other families who had received similar treatment - all who had it saw significant progress, so she applied online. After the facility gave the McCullochs a simple approval based on Ava's medical records and x-rays, a representative contacted them and helped them with their passports and other important information. The family had never been out of the country before, and this would be Jessica's first time on an airplane.

Jessica said that they attempted to involve the doctors here, but most were not supportive or they were negative and thought the family could not raise the necessary funds for such a trip. "When I was asked what if I didn't raise the money, I simply stated we would continue until we did," Jessica said.

What followed for the McCullochs were many fund-raisers to raise the money. Insurance did not cover stem cell treatments or alternative therapies and equipment. So the family worked a few concessions and planned some events, and with the help of advertising, donations from supporters started flowing in. "Every donation counted because it helped pay for more ink and paper for flyers or advertising, and so on," Jessica reflected. "We did have slow points, but God always provides."

After raising $40,000, the entire McCulloch family - Jessica, her husband Travis, and their children Jessie, Ava and Ethan (who was only 10 months old at the time) - left for Chengyang People's Hospital in Qingdao, China, in July 2011. Ava received six stem cell treatments using umbilical cord blood and a variety of daily therapies, including accupuncture. During this time, Jessica noticed marked improvements in her daughter's response to treatment.

"We have videos showing she was unresponsive to the pain of the needles for the first six days, and oddly enough, on the seventh day, she started to cry," Jessica said. "This cannot be the placebo effect as some say. She is too young." While in China, she said her daughter gained sensation, strength, speed in walking, endurance while walking and wiggled her toes more.

"Her left foot, which was always pulled up tight, is also more relaxed," she reflected. "One month after returning, we caught Ava looking at her left foot, and she was tapping it and turning her ankles left to right and up and down. We haven't seen this movement." In addition, Ava began responding to gentle touch on her feet when before she did not.

Ava and the family had four translators working with them - Jason, Joyce, Amanda and Mars. All of the translators and the rest of the staff would spoil the McCulloch kids. "Doctors and therapists were very affectionate and would pick Ava and Ethan up to hold or hug them," she said. "It was very different from what you see here. A breath of fresh air." She added that she and her husband were also treated very well. "More than we deserved," she added. "After all, we were just normal people like them." They still stay in touch with many of the people and friends they made there via Skype, Facebook, or through email.

The McCullochs returned to the U.S. in August 2011, and Ava continued to make progress. Ava's therapist said that she went from walking 30 feet before treatment in her braces to walking 106 feet after treatment in her ankle braces. Now she walks around 300 feet. In addition, she brings her right leg forward when she used to drag it behind her. She walks further, faster, and is much more stable when she walks.

Unfortunately, even though Ava's improvements are permanent, at some point, the stem cells will stop progressing. Therefore, doctors recommended that Ava return for more stem cell treatments within one year. Jessica noted that it was important for Ava to get the treatment while she is still small and her legs are proportioned well with her body, because if she gains strength and sensation, her legs and feet will stay caught up with her growth.

Ava continues her accupuncture treatments in Zanesville, and since her stem cell treatment last year, her orthopedic doctor confirmed that she has hamstring function that wasn't there prior to the treatment. In addition, the urologist said her bladder is holding more before having a spasm, which can keep her from needing to be catheterized. "I have also recently seen her toes on her drop foot all flex gently back when stretching," Jessica added excitedly.

Recently, with the help of another mother, Jessica started a foundation called Warrior Families Beating Spina Bifida. The foundation provides grants and financial assistance to those with spina bifida as well as assistance with non-embryonic stem cell treatments and other therapies. It also provides a support outlet to connect with experienced, knowledgeable families.

As for Ava, Jessica describes her as "spunky." Ava was not afraid while she was in China receiving her treatments, and she speaks often of the friends she made there. "Ava can have such a deep conversation with you," her mom said. "She is only three and requests for me to pray for certain people or things. She will say, 'Close your eyes, hold my hands. Now pray!' and she'll tell me what for. She has even told me last year, 'Mommy, you make me so happy'."

While in China, she learned to say a few words, and her mom said she even figured out how to argue in half Chinese and half English. When a local news channel did a story on Ava, Jessica said Ava yelled into the camera, "Ni hao, Amanda!" (which means "Hello, Amanda!") to one of her friends in China. When Amanda and the others in China saw the broadcast, they cried with joy and were "jealous of Amanda because Ava said her name and not theirs," Jessica added with a laugh. "She loves the other children she met in China and asks to pray for them. I know that God is using her for more than her own healing. I believe that God will heal her."

The McCullochs wish to return to China to continue Ava's treatments in the hope that she will some day walk without braces. The family secured a $2,500 grant called Next Step Kids to help pay for their next trip, but they still need to raise approximately $30,000. Several fund-raising events are planned for April and May, but the largest of these is "Pave the Way Day" on Saturday, May 26 at the Guernsey County Fairgrounds in Lore City (Old Washington), Ohio. The event begins at 9 a.m. and lasts all day. Vendors and food concessions are still needed, as well as farmers markets. A full day of events are planned, including a car, truck, tractor and motorcycle show, horse shows, pony rides, a bounce house, food, music, concerts, entertainment, cotton candy, a square dance, all you can eat pancake breakfast at 9 a.m., auction, 50/50, and more. Volunteers are needed, as are auction item donors and cars for the auto show.

Proceeds of the event will benefit the Ava McCulloch Fund and the Warrior Families Beating Spina Bifida Foundation. "There are families who are also in the fund-raising stages and trying to seek treatments in China and Mexico," Jessica said, noting the importance of helping other families as well.

Jessica is very appreciative and thankful for all those who have helped Ava so far. "Thank you to so many who got us here and had willing hearts and open minds," she stated with deep sincerity. "And thank you to God who supplies all of our needs, even when we were surrounded by people saying we couldn't get there."

To make a donation to Ava's fund, send donations to Century National Bank, Ava McCulloch Fund, 14 S. Fifth St., Zanesville, Ohio, 43701. To learn more about "Pave the Way Day" or to register for the event, visit www.pavethewayday.intuitwebsites.com.

 
 

 

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