Nathaniel’s StoryStory Told By: Alysha, Nathaniel's Mom
“We’re so very grateful for the wheelchair and the van. We wouldn’t have been able to continue functioning normally without them. The use of these devices have helped our family TREMENDOUSLY. Nathaniel, our precious gift from God, is non-ambulatory. He cannot support himself on his own, sit up, roll over, hold his head up unassisted for long periods, walk etc. His growth and weight gain have gradually made it more challenging to transport him unassisted. I am petite and am not the strongest, most muscular woman out there for packing around a “sack of potatoes” as we humorously call him. The wheelchair has helped me and Nathaniel with daily activities by transporting him throughout the house and by providing an alternative seating option when he grows weary of the couch, his sensory box or Tomato Seat feeding chair. By having wheels, I use it to “rock” him back and forth in a soothing motion to calm him when he’s fussy. It is used for entertainment thanks to the attachable tray that comes with it. We use it for feeding him when he’s plugged into his feeding pump. He joins us at the table for meal times when he’s in his wheelchair. We use the it for frequent outings to the neighborhood park which is 2 blocks from our house or for a calming walk at night during the cool summertime hours in the evenings. And of course, it is used as his “car seat” for when we travel in the mobility van. It’s amazing how much we truly do use his wheelchair for what we consider our “normal” activities around the house. As a stay at home mom, I don’t know what I’d do without the help of that wheelchair. I use it for Nathaniel more than I ever thought possible. It’s become a very vital part of his life. It is almost like an added limb to help him with his daily transportation needs.
The van is another HUGE blessing! Before, we had a Chevy Suburban and a typical standard infant car seat for Nathaniel. Suburbans are four wheel drive vehicles and sit higher off the ground than front wheel drive vehicles. When manually transporting a handicapped, hypotonic child from the wheelchair up into the car seat of a big vehicle becomes physically taxing in a hurry. Then after the child is safely strapped into the car seat, the next step would be to strap his older brother (who is an energetic, rambunctious toddler) into HIS car seat. Next step, fold up the wheelchair (which is a beast in itself weighing around 60 lbs) and hoist it up into the trunk of the Suburban. By now, a simple errand into town had become an exhausting, laborious feat just to get out of the house!! At this point, I questioned if it was even worth going through all of this BY MYSELF! Lol. And then once we reached a destination, I would have to repeat this process several times whenever we needed to get in or out of the vehicle. By the end of the day, I would be an exhausted mess because my physical strength was pushed to the max. My trips to town were few and far in between when my husband was busy working on the farm unless they were absolutely necessary. He’s much stronger than I am and is able to tolerate Nathaniel’s “dead weight” a lot better than me. Eventually, Nathaniel was going to outgrow his standard infant car seat and we wouldn’t have been able to find one in stores that would provide the necessary trunk support that he required. Choosing a special needs car seat was out of the picture because I still would have needed to hoist him up into our big Suburban and risk damaging my back in the process.
Due to the struggles I was having, we chose an automatic in-floor side entry ramp system with the van. And my oh my what a God send it has been!! Now all I do is strap Nathaniel into his wheelchair, push a button on my keys to open the side door and ramp (the van also has a hydraulic system which causes it to kneel down closer to the ground for us too), wheel him up into the van, position the wheelchair in the proper spot, strap it down with the auto-retractable straps attached to the van floor and BAM!! The loading process is complete! AND! Our oldest son, Samuel, is a big enough to help in securing the straps to the wheelchair with Mommy which quickens the process even more. Then, he crawls up onto his booster seat and buckles himself in. Now, the process takes about 5 minutes to get Nathaniel loaded and ready for action in the van.”
Nathaniel is a two-year-old boy with a rare genetic form of epilepsy. Nathaniel and his family worked with our Equipment Fund to purchase an accessible van last year and recently began working with our Wheelchair & Posture Seating Clinic for Nathaniel’s first wheelchair stroller.
“I feel accepted here.” – Linda’s StoryStory Told By: Linda Durland
Linda is a Timbers resident and client in our Exercise & Wellness Program. She shared her thoughts with us about both CPRF experiences.
On living at The Timbers:
“A really wonderful place to live. I feel accepted here.”
On her experience with the Exercise & Wellness Program:
“I whole heartedly really enjoy it. I’ve noticed a difference already in my daily life. I’ve only been doing it 3 weeks and I can already tell a difference. I ahve a walker that I use and I’m getting stronger. I was having trouble getting in and out of bed, and it’s really strengthening my muscles to where I can get in and out of bed easier. Even little things you don’t even think about. It’s just phenomenal. I’m enjoying how it helps my mood and it’s give me a purpose to get up in the morning.”
“…they were both awesome.”Story Told by: Mary Valeka
“I just got done at Carney Center and dealt with Daniel and Greg and they were both awesome. Kathy was very good too.”
Mary is a resident at The Timbers, a wheelchair accessible housing community on CPRF’s campus. The Timbers apartments are closely located to the Wheelchair & Posture Seating Clinic, also on campus. Having the clinic nearby makes it convenient for residents to consult with the clinic’s staff and have adjustments made to their customized seating systems.
“He’s improved in so many areas…” – Steven’s StoryStory Told By: Dorothy, Steven's Mother
“…I’m thankful that Steven goes to the day program…he talks better, I can understand him better and he’s really doing good with his vocabulary and with his speech…he’s improved in so many areas. I’m just amazed at how much he’s improved because I thought he would never talk.”
Steven has been coming to the Adult Day Program for over a decade.
Deborah’s StoryStory Told By: Susan, Deborah's Mom
“It’s given her a sense of purpose, to get out and do something everyday… we want her to have an alternative to being at home. She’s benefitting from it as far as the social aspect and going in a different direction than she would have from just being at home. We appreciate the people that work with her and the care she’s given.”
“Therapy is my lifeline…”- Greg’s StoryStory Told by Greg Dailey
“It’s been 5 years and it has improved me everyday. Therapy is my lifeline. I have mobility and little things that people take for granted. I’m pleased.”
Greg experienced a traumatic brain injury and coma that altered his speech and mobility. He has since regained his speech skills and through therapy, he has gradually become more ambulatory and independent. Greg started therapy using a manual wheelchair, then over time progressed to using a walker for longer distances. Today, Greg has been able to work up to solely using a cane with his dedication to physical therapy.
Greg’s story was made possible by CPRF’s Exercise & Wellness Program.
Colette’s StoryStory Told By: Josh, Colette's Dad
“It’s given her the freedom to move about on her own and engage in the world on her own without having the need for assistance every second of the day…I think this is her favorite place to drive!”
Colette’s head array control system was made possible by CPRF’s Wheelchair & Posture Seating Clinic, where she has been test driving her seating system.
Sutton’s StoryStory Told By: Tiffany, Sutton's Mom
“He wouldn’t be able to do half the things he does…he loves playing games and sports and going to school, he likes to do anything a normal four year old would do…He’s able to support his core area because his seat is so much more comfortable and customized to him… it helps his posture so he can work with his hands a lot better.”
Sutton’s customized seating system was made possible by CPRF’s Wheelchair & Posture Seating Clinic.
Jesus’ StoryStory Told By: Alicia, Jesus' Mother
“His wheelchair gives him independence to go to school, and even enjoy time at the park with his friends, without needing my help to get around.”
Made for the Country – Peggy’s StoryStory Told By: Mike Bailey, Peggy's Husband
“Since we live out in the country she’s able to get around and do things she hasn’t been able to do before. Normal wheelchairs or scooters aren’t made for the country…it’s her little Harley, it does almost everything a four wheeler would do…it’s light enough that she can move the batteries and she can take care of it. She’s more self-sufficient, she’s about to get out and do stuff she wasn’t able to do. This spring we’ll be able to go camping…we won’t have to rely on crutches or anything on the rough terrain. Besides physically helping her get around it helps her get out of the house to where she’s not depending on everybody. She has control.”
Peggy has spinocerebellar degenerative ataxia, and uses an all-terrain scooter and scooter lift to enjoy the outdoors and live with more independence.
Peggy’s scooter and scooter lift were made possible through assistive technology funding.
Enjoying the Ride – Rick’s StoryStory Told By: Shirley, Rick's wife.
“Thank you so much for the assistance to help purchase our new wheelchair van. It is such a blessing to us. It has certainly made our lives easier. Rick had a stroke this last March making it harder to get into our van. Now we are able to go more. We went to a wedding in Kansas City and it was so easy to get in and out. We are just so humbled by the generous gifts we received. Since the spinal cord surgery in 2014, his travel has been limited. We now feel that will change because of this new van. What a wonderful blessing! We are enjoying the ride.”
Rick’s wheelchair van was made possible through funding and support from United Cerebral Palsy of Kansas.
Connor’s StoryStory Told By: Kelly, Connor's Mom
“Connor was born with torticollis and plagiocephaly, which means he had a shortened neck muscle and his head was misshapen. Our insurance denied coverage for the cranial molding helmet…because they consider it cosmetic. It was difficult to find financial help because my husband and I both have jobs, so we didn’t qualify for most programs. The doctor told us to contact CPRF, and shortly after filling out some simple paperwork, we received a check to help us purchase a molding helmet.
We recently celebrated Connor’s first birthday, and his head looks great! I really appreciate the assistance we received and how quickly we received it.”
“…I can’t say enough good about them.”Story Told By: A Wheelchair & Posture Seating Clinic client
“The team at CPRF- from reception, to PT’s, to the MacGyvers in the back- is amazing! I can’t say enough good about them.”
“…the process of getting the new wheelchair was flawless.”Story Told By: Ruth Ryan, Wheelchair & Posture Seating Clinic parent.
“As always the process of getting the new wheelchair was flawless. The insurance process, appointments, and final fitting were great. A big thank you to Kalen, David K. as well as the always helpul, kind, and knowledgeable team of Daniel and Greg making all the fits just right. Thank you for all the care shown for my loved one.”
A Life Changing Ride – Caleb’s StoryStory Told By: Rahel, Caleb's mom
“Getting this modified van took us a year in finding a reasonable price with our specific needs (we have 4 kids and getting the extra seat was a challenge). We found a great deal in Maryland so my husband flew out and drove it back to Kansas. Having this van is such a blessing. Now we can go places without a problem…what a life change. May God bless everyone who helped us in getting this modified van.”
Caleb’s modified van was made possible through funding and support from United Cerebral Palsy of Kansas.
Phillip’s StoryPhillip's story was made possible by The Carney Center Wheelchair Seating and Posture Clinic Program and funding from UCP of Kansas.
Phillip Nickell is a 13 year old boy with Transverse Myelitis. This is a condition that does not allow him to use his arms or legs in any functional way. Phillip will be essentially paralyzed from the neck down for the rest of his life. Phillip is an active young man and attends middle school full time. Phillip and his family came to the Carney Center for a powered wheelchair evaluation. The Carney Center PT with the DME provider found that Phillip could drive a powered wheelchair using a head array. A head array is special headrest that has three proximity switches mounted in it. By just moving his head, Phillip can drive his wheelchair and use the powered seat options which will help Phillip to adjust his pressure on his pelvis.
This wheelchair is very complex and not easily understood by Phillip’s third party insurances. The Carney Center therapist was able to help identify each reason why Phillip needed the wheelchair and how it could impact his life at school and at home. The powered wheelchair was delivered to Phillip and his family on 6-20-14. The appointment took two hours and centered on advanced programming and teaching Phillip and his family how to use and be safe in the wheelchair.
Funding from United Cerebral Palsy of Kansas made access to the wheelchair for Phillip possible.
UCP Assistive Technology and Community Service – David’s StoryStory Told By: Dave Jones of United Cerebral Palsy of Kansas
David is a 30 year old man with Cerebral Palsy. He first began receiving help from UCP at the age of 10. Over the years UCP has assisted David in acquiring different types of equipment including
even an accessible van. David has been followed in the seating clinic since it’s inception and has received financial aid toward wheelchairs and wheelchair modifications for many years. UCP’s staff also assisted David with accessing and learning to operate computers when he was just a youngster.
Two years ago CPRF hired David as the administrative manager at the Carney Center. His responsibilities include scheduling clients, inputting data, welcoming clients, and answering numerous questions over the phone. Probably one of his greatest assets for the job is his understanding of the needs associated with being in a wheelchair on a full time basis.
David is also fluent in Spanish; his ability to interpret has proven to be extremely valuable both in scheduling and in assisting the therapists and technicians while evaluating and fitting seating systems. He is married, living independently and (as of this writing) has a four month old son. He’s also a fair share giver to United Way!
”….I don’t know what I’d do without them!”Story Told By: United Way of El Dorado
Karen Patterson, an El Dorado resident and retired special education teacher, was diagnosed with Multiple Sclerosis approximately 20 years ago. Over time she has come to require a very specialized seating system for her power wheelchair. The system is custom made by the Cerebral Palsy Research Foundation in collaboration with United Cerebral Palsy.
The chair itself has tilt and recline features that allow Karen to re position herself in order to remain comfortable. Leg raisers allow her to improve circulation in her legs. Lateral supports help prevent scoliosis and keep her upright to facilitate breathing and digestion. A specially fitted seat cushion helps prevent pressure sores from developing. The chair provides Karen with the mobility she needs to make it to medical appointments as well.
Karen admits she is somewhat amazed by all the things the seating clinic has done to make her life easier and help assure her health and independence. Karen sums it up by saying ”I don’t know what I’d do without them!”.
The Wheelchair & Posture Seating Clinic is funded in part by the United Way.
From grad to pro – Ashlea’s story
Ashlea describes herself as punctual, dependable, and reliable. Those who know her, including the CPRF School of Adaptive Computer Training staff, speak very highly of her positive attitude and strong work ethic.
We were first introduced to Ashlea when she began attending the SACT Business Fundamentals for Youth Program. Though the school originally opened for adults affected by the digital divide, we now partner with Unified School District 259 and Butler County Special Education Interlocal. Thanks to funding from supporters like you and contributions from the school districts, CPRF is able to offer morning and afternoon classes to help high school students like Ashlea earn high school credit and learn skills that enable them to pursue their college/vocational goals.
SACT staff looked forward to seeing Ashlea’s smiling face every day in class. Our classroom is ideal for students who use wheelchairs, walkers, or have other special needs. In addition to the fully accessible classroom, this unique program uses video conferencing equipment to connect with a remote learning classroom for students in Butler County.
Despite her diagnoses, Ashlea has not allowed autism, obsessive compulsive disorder, or attention-deficit hyperactivity disorder to define or limit her.
In fact, Ashlea excelled in our program. “Ashlea had excellent attendance and a fantastic attitude,” said Aaron McAnarney, SACT instructor.
The respect was mutual. Ashlea appreciated Aaron’s support, saying, “He’s a sharp guy. If I got stuck on a hard problem, he would help me.”
Ashlea completed our program in May 2014, earning Microsoft Office Specialist Certifications in both Microsoft Word and Excel along with two high school credits.
But Ashlea was setting even higher goals for herself.
While attending the school district’s Chisholm Life Skills Center, Ashlea was able to use her new computer skills to participate in Project Search – a business-led high school transition program that gives students a year’s worth of work experience. This workplace immersion facilitates a seamless combination of classroom instruction, career exploration, and hands-on training through worksite rotations.
Ashlea’s training, internship experience, and determination to succeed resulted in a full-time employment offer at the Sedgwick County Treasurer’s Office. She takes public transportation to the courthouse every day and proudly passes through security wearing her badge. When asked what she is most proud of, Ashlea said, “I am most proud of graduating from Chisholm, receiving certifications from the SACT, and my full-time employment.”
When given the opportunity to learn and train in a supportive environment, Ashlea’s future changed dramatically.
“…my life is more comfortable and easier…”Story Told By: Ami, Daniel M. Carney Rehabilitation Engineering Center customer
“I just want you to know that I appreciate everything you do to make my life more comfortable and easier.”
“… I needed to get back on my feet…”Story Told By: Rose Sells, CPRF employee and Timbers resident
“CPRF has played a very big role in assisting me in being independent. Being employed by CPRF and living at the Timbers came at a time in my life when I really needed that sense of independence that I needed to get back on my feet.”
“…Timber Lines has been a God-send to us…”Story Told By: A Timber Lines Transportation Services customer
“We’ve been using Timber Lines for transport to doctor appointments since Mrs. P became so fragile that we could no longer get her into and out of the car without injury to her or ourselves. Timber Lines has been a God-send to us.”
“…Quality takes time…”Story Told By: Joel Strain, Wheelchair & Posture Seating Clinic client.
“The Carney Center has played a vital role in allowing me to maintain an active and healthy lifestyle. Their thorough and personalized approach can sometimes require hours of waiting. Quality takes time.”
“…Her chair is her life…”Story Told By: Dinell Stuckey, Wheelchair & Posture Seating Clinic parent
“Brianna’s chair is her life. Without her wheelchair, we cannot access anything in her world or around the room. I can’t imagine her going to school all day without a specialized seating system.”
“…It’s just a joy to work with the clients and the staff…”Story Told By: Angie Norris, Sedgwick County Master Gardener and Adult Day Services volunteer
“We feel like we walk away with more than we came with. It’s just a joy to work with the clients and the staff.”