UCP Joins Forces with CPADSAG

Pediatric Treadmill Training Hits the MidstateUCP Joins Forces with Central PA Down Syndrome Awareness Group

doc4ad466750a918001675066"Infants with Down syndrome begin to walk, on average, about one year later than typically developing infants. Treadmill training is an evidence-based technique that ideally should be available to all families of babies with Down syndrome. The treadmill provides repeated opportunities for the child to improve balance, build strength in the legs, and stimulate the nerve connections that are involved in independent walking. This stimulation results in babies who have experienced treadmill training being able to walk as much as 101 days sooner than children not participating in the training."

That’s Diane Isham, UCP staff Physical Therapist, talking about the benefits of treadmill training. The statistic about children being able to walk up to 101 days sooner as a result of such training was all the motivation she needed to begin exploring ways to adopt this practice with her clients. Diane first became aware of the value of pediatric treadmill training in 2007 when working with Heather Fox- Kauffman and her son Carson, a baby with Down syndrome who was receiving physical therapy services from UCP. Together, Diane and Heather tried to implement the treadmill training with Carson sing a regular size treadmill. Unfortunately, his weight made it too hard to hold him suspended over the treadmill.

doc4ad466750a9180016750661At that time, there was no money available or any other means of obtaining the necessary equipment—a walker with suspension system—that would make the training possible for Carson. So, with mounting frustration and great regret, the training was discontinued. At that point, Heather made it her mission to find a way to purchase the suspension system so that other children facing similar challenges would experience a different outcome.

In 2008, Heather and her husband Steve joined two other families of children with Down syndrome to form the Central PA Down Syndrome Awareness Group. A key element of the Group’s mission is to provide grants to families of (and agencies providing services to) children with Down syndrome. The funds are granted on an individual request basis to aid in promoting personal development of individuals with Down syndrome.

The group’s first such request--and the first approved-- was Diane’s request for funding to enable the purchase of a pediatric treadmill and suspension system. In approving the grant application from UCP, the Down Syndrome Awareness Group agreed to provide funding to cover the full costs of the walker/suspension system and half the costs of a pediatric treadmill machine. That still left half the cost of the treadmill to cover.

In a moment of serendipitous timing, retired PA Representative Jerry Nailor and his wife Donna sent an unsolicited donation to the UCP Foundation of Central PA. Their only request was that the funds be designated for use by childhood programs. Their donation was sufficient to cover the remaining costs of the pediatric treadmill machine.

Finally, it looked like Diane and Heather’s shared dream of bringing pediatric treadmill training to the midstate was going to become a reality for some lucky family.... That’s when Diane came up with a brainstorm: why not make plans to house the newly funded treadmill equipment at UCP’s Capital Area Children’s Center, where it would be accessible for multiple families to use?

During this time, Diane began working with Ed and Wendy Corcoran, parents of Melodie, an 18- month old girl adopted from Korea. The Corcorans were owners of an adult treadmill and were working with Diane on treadmill training with Melodie. Once again, the baby’s growing weight was becoming an issue.But this time, the outlook is much better. Thanks to the pediatric treadmill and suspension system, Melodie is able to continue her training.

The treadmill training takes place in eight one-minute increments a day, with the child eventually building up to eight minutes at a time. The remainder of the time the equipment is left idle.

Under Diane’s plan, rather than just one family being able to avail themselves of the equipment, any number of families can schedule the training at the Children’s Center at their convenience. In fact, the Corcoran family “testdrove” the new equipment for a week in August... and the results were amazing. “Using the treadmill suspension system made all the difference in our treadmill time with Melodie. Rather than becoming frustrated within a minute or two of training, she giggled nd smiled the entire time we used the system,” Wendy marveled. “Our family is so grateful to Diane Isham and all who made this innovative tool available to children in our community.” Just as exciting, it is anticipated that this service will be expanded for use by families of children with other physical disabilities, such as cerebral palsy, in the future.

Way to go Diane! Talk about fulfilling a mission... both her own and that of the agency that employs her.

For more information about the treadmill training, or to take advantage of this opportunity, please contact: Diane Isham 717-975-0611 / 800-998-4827 Email: disham@ucpcentralpa.org

Local girl to be featured in Times Square video

By Jason Scott, Sentinel Reporter, August 26, 2009

camryn_on_bikeCamryn Lilly will get her first moment on the big screen next month.

The 7-year-old from North Middleton Township was one of about 200 individuals selected from thousands around the world to have her photo included in the 2009 National Down Syndrome Society’s Times Square video, which will be shown Sept. 26, the day of this year’s New York City Buddy Walk in Central Park.

Her mother, Bettina Lilly, receives the organization’s monthly newsletter and said she read about the Times Square video a few years ago. This is the first time a photo of Camryn has been selected.

“She said, ‘I am going to be a supermodel,’” Bettina said of her daughter’s response as the family plans to make the trip to New York City for the event.

Camryn was diagnosed with Down syndrome at birth.

“My first initial reaction was embarrassment,” Bettina said of the news.

“I just wanted her to be OK,” she said, concerned that her daughter had heart problems.

Camryn was weaned off the oxygen and test results found no heart irregularities. The only thing the family struggles with today is her weight, Bettina said, also noting Camryn can have difficulty transitioning from one task to the next.

Bettina also has a 13-year-old daughter named Kaylee.

The family moved to the Carlisle area two years ago from Virginia Beach.

camryn

Buddy Walk raises funds for Down Syndrome group

Buddy_Walk_logo_color-websiteThe Carlisle area’s first-ever Buddy Walk and auction on Sept. 20 drew 287 walkers and collected almost $13,000 for the fledgling Central PA Down Syndrome Awareness Group, according to group president Brian Guillaume. Guillaume said the walk was a success.

“We are actively seeking some grants and possible community events to outlet our money to,” Guillaume commented, noting that possibilities include special needs camps and informative seminars for parents.

The group was founded earlier this year by three families who have children with Down syndrome and a goal of helping other families just like theirs.