By JULIE MARIE BUSH
OBSERVER Staff Writer
WESTFIELD - It is not easy for any parent to find out that their child will have lifelong health complications. Westfield resident Amanda Roets is not letting this challenge knock her off her feet - she's fighting back.
OBSERVER Photo by Julie Marie Bush
Amanda Roets of Westfield and her 1-year-old son Max.
Roets, along with fellow runners and friends Scott Gorski and Liz Keicher representing Team "Take That," will be running in the New York City Marathon to raise money for the Spina Bifida Association on Sunday, Nov. 6. All three parents and their spouses know the struggles of raising a child with spina bifida firsthand.
Roets is a mother of 1-year-old son Max who was diagnosed with spina bifida and a cleft lip and palate about 20 weeks into her pregnancy. She and her husband Tim found out through a blood test and a sonogram during her pregnancy that her son wasn't healthy. The news from the doctors was "shocking, unexpected and something you never want to happen," Roets said.
"His lesion is pretty high, it's an L2L3, so he doesn't move his legs a whole lot," she explained. "It's a question of will he be able to walk. He probably won't be able to walk without the assistance of braces, walker or crutches."
Her son spent the first three months of his life in the hospital, restricted to lying on his stomach. Max has had seven surgeries and will face more in the future. He has several therapy sessions a week, including physical therapy, occupational therapy and speech therapy. He has regular visits to Buffalo Women and Children's Hospital and Shiner's Hospital in Erie to see a neurologist, urologist, orthopaedist, plastic surgeon and developmental specialists.
Max's therapy and hard work are paying off; he can roll, sit independently and pull himself forward a few inches on his belly. He is starting to get around in his new pediatric wheel chair.
To help manage Max's care and many appointments, Roets went from working full-time as a physical therapist at Absolut Care in Westfield to working per diem. Both sets of grandparents also help out as frequently as they can since they both live an hour and a half away away. Her husband Tim is a dentist in Westfield.
In preparation for the upcoming marathon, Roets runs five times a week and she follows a training schedule, which progressively works its way up to 26.3 miles. In high school she wanted to start running but never got into running until she was in AmeriCorps. In 1998, while in AmeriCorps, she and her friends Herrmann and Montana started running together. She ran with them in the Cincinnati, Ohio, marathon in 2008.
"Running has been a good stress reliever, it allows me to get out and about," Roets said. "Running allows me to eat anything I want."
Her teammate Gorski and his wife Carey of Williamsville have a 9-year-old son Joshua with Spina Bifida. Gorski met Roets, Tim and Max a few months ago through Keicher, a mutual friend. Keicher invited Roets to run in the marathon with team "Take That."
Joshua is able to walk without assistance. However, like most other children with Spina Bifida, he has a shunt for hydrocephalus and has challenges in managing his bowels and bladder. He receives occupational therapy, physical therapy and special education services in school. His mother has worked part-time since Joshua started kindergarten so that she can care for Joshua before and after school.
This is Gorski's second time running a marathon. He ran in the New York City Marathon last year as part of a five-person team to raise money for the SBA (Spina Bifida Association). Last year they raised approximately $30,000 and Gorski raised $13,000 of that.
"I am using a formal 18-week marathon training program from author and marthoner Hal Higdon, his Novice I program," Gorski said. "I also keep up a regular running schedule prior to the start of the 18-week program to be better prepared this year. I do a tremendous amount of stretching before and after all my runs and even on my days off. I ice my knees for approximately 30 minutes after each run, and I use electrical stimulation to fight tendonitis in my left Achilles heal."
Keicher and her husband Chris, Lancaster residents, have a 27-month-old daughter Emily who has Spina Bifida. She was diagnosed with L4myelomeningocele, which meant that her backbone (spine) and spinal column, starting at Lumber level 4 of the spine, did not finish closing as it should have. The spinal cord, spinal nerves, and the tissues covering the spinal cord never finished forming or closed, so from L4 down Emily had an open lesion and everything from that level down was effected. When she was 24 hours old, she underwent surgery to close the lesion at Children's Hospital of Philadelphia.
The cause of her Spina Bifida is unknown. There was no family history. Keicher took folic acid for 10 months leading up to the pregnancy and during the entire pregnancy.
"I just couldn't fathom how the health and future of our baby was in jeopardy, and to say we were scared, crushed and heartbroken was an understatement," Keicher said. "But we also knew that regardless of what Emily's future was, regardless of her medical or developmental needs or whether she could walk, we loved her and hearing the diagnosis of Spina Bifida didn't change that."
Emily gets therapy six times a week, two physical therapy sessions, two speech therapy and language therapy sessions, and one aquatherapy session. She is able to walk with the use of ankle-foot orthotics and a pediatric walker, and she is also learning to walk with forearm crutches. She also has a neurogenic bladder and bowel and other related conditions such as kidney reflux. These are managed daily with medications and other medical methods.
"Emily hands-down is my sole motivation for doing this (marathon)," her mother said. "I never ever would have considered taking running to the level of a marathon before meeting her. But I want Emily to see me leading by example. I want her to know that we know she works hard and so we work hard for her. I think about how she never quits. How she pushes in therapies, even in tears. She always pushes through."
To get in shape for the marathon, Keicher is doing lots of running of course. She follows an 18-week training plan that she started in July with incremental mileage peaking at 50 miles per week which she began in September. She runs from Monday to Friday, then she does a long run ranging from 15-22 miles on Sunday. She also cross trains with spinning 2-3 times a week and strength trains 4 to 5 days.
This is Keicher's second time running a marathon. Last year she ran her first marathon in New York City Marathon and it was also for the Spina Bifida Association. Keicher credits her sister Kathleen Webb for working to make the Spina Bifida Association a charity partner for the NYC marathon. Webb has ran the New York City Marathon for the past five years. After completing the 2009 marathon, when Emily was just 5 months old, Webb reached out to the National Spina Bifida Association to see if they would partner with the marathon. After a few months of working with them, she brought Keicher on board to help convince SBA that they could raise a lot of funds and really get the word out about Spina Bifida. In the spring of 2010, the SBA was accepted as a charity partner and granted five marathon spots in return for raising funds for the Association.
"My husband Chris and I raised $8,000 and our team raised $31,000," Keicher said. "On Nov. 7, 2010, myself, my sister Kathleen, two family friends and Scott Gorski were the first team to run New York City for the Spina Bifida Association. It was a great fundraising success and the Association agreed."
Shortly after the 2010 New York City Marathon, SBA applied to be a charity partner for the 2011 NYC Marathon, this time asking for 20 spots. This year Team "Take That" has 10 runners; half are parents of the children who happen to have Spina Bifida and the other five are family and friends. Roets' goal is to raise $5,000 and complete the marathon in less than five hours. The money raised will be used to assist in diagnosis, education, activities, scholarships and ongoing research to find ways to prevent this life threatening birth defect.
Another fundraiser, organized by Team "Take That," will be held this Sunday from noon to 6 p.m. at the Bison City Rod and Gun Club in Buffalo, on 511 Ohio St., Buffalo. The cost is $20 for adults, children ages 5 to 20 are $5, and children under 5 are free. All five of them have advertised, solicited and received many donations for this event. They will be raffling off Jim Kelly autographed football, Thomas Vanek autographed hockey stick, Patrick Kane autographed Blackhawks jersey, Sabres tickets, Bills tickets, tons of gift certificates and 30 plus baskets and a 42" flatscreen TV.
"We are a great support system to each other," Roets said. "We all know the language of Spina Bifida, and we know what each of us is going through."
To find out more about Spina Bifida, visit www.spinabifidaassociation.org.
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