banner

The New Stuff

briellas-bike-4
4459 Views

Inclusion, Adventure, and Therapy with Freedom Concepts


Editor’s Note: In 2014, Michigan residents Caroline Booth and Matt Naif welcomed their daughter into the world six weeks prematurely. After some time in the neonatal intensive care unit, they left the hospital thinking baby Briella was ready to settle into home life in good health. A year and a half later, some concern arose when the new parents noticed she wasn’t hitting all of her milestones. Tests confirmed periventricular leukomalacia and cerebral palsy — the former likely the cause of the latter. Since then, when not at doctor visits, therapy sessions, or working, Caroline devotes her time to educating herself about cerebral palsy and promoting disability awareness through social media. She recently chatted with Wheel:Life writer Betsy Bailey about Briella’s heartening approach to being a toddler with CP and how Freedom Concepts and Variety the Children’s Charity Detroit helped bring hope for an adventure-filled, inclusive childhood.

briellas-bike-3

Briella has the spastic quadriplegia form of cerebral palsy. Spasticity causes stiffness in her body which affects range of motion and makes it difficult for her to walk. After being evaluated by a neurosurgeon, Briella was approved for selective dorsal rhizotomy (SDR) and will undergo surgery this summer. A lot of adult patients with cerebral palsy live in chronic pain due to the effects of spasticity over the years. Essentially, SDR will give Briella a better chance of unassisted walking one day. That’s the ultimate goal for us.

This will be a big year for her. Go, Briella, go!

Editor’s Note: For more information on selective dorsal rhizotomy, visit the Center for Cerebral Palsy Spasticity page on the St. Louis Children’s Hospital website.

Sharing Our Story

briella-1When we got Briella’s diagnosis, we didn’t know much about periventricular leukomalacia or cerebral palsy. As parents, we ask ourselves every day how to make the best possible life for our daughter. I’ve done so much research on treatment options and extra therapies that I decided to start a Facebook page called Briella + Me to share our story and possibly help other parents going through similar situations.

The Costs of Giving Children a Chance

Briella’s doctor is recommending several intensive physical therapy sessions per week post-surgery, but our insurance only covers 30 visits per year. Many parents of children with disabilities cannot hold full-time jobs, myself included, due to the time constraints of regular doctor visits, physical therapy sessions, and other appointments. How can we be expected to afford these extra visits that are so critical for setting our children up for success later in life? To help our family with those costs, I created a YouCaring campaign. We are also hoping to raise enough funds for stem cell therapy which has been producing amazing results in children with cerebral palsy.

Editor’s Note: To contribute to Caroline’s campaign and learn more about Briella’s prospective stem cell therapy treatment, visit the family’s YouCaring page.

Briella’s Battles

briella-3Briella’s biggest obstacle is the development of gross motor skills. She is unable to walk on her own and wears ankle braces to aid with balance. She also has apraxia of speech, so even though she is three and a half years old, she can only say a handful of words. Trying to figure out what she wants when she is clearly frustrated is a big challenge, so we’ve been doing sign language with her. Cognitively, she is smart. She can point to things; she knows her colors and shapes. She just can’t get those thoughts out into speech. We are also still working on potty training.

Despite these hurdles, she is pretty happy all the time. She smiles a lot and enjoys arts and crafts. At school, she’s very social and loves to play.

Pedaling Toward Freedom

On Instagram, I follow a woman who had posted a photo of her daughter on a Freedom Concepts bike. After doing some research, I thought it’d be so amazing for Briella to have a therapy bike. I sent an inquiry email to Freedom Concepts and they wrote back with some questions for me about Briella’s measurements and her physical abilities and then put a quote together for me. A custom-made bike is quite pricey, and I was surprised to find out that health insurance doesn’t cover any of it. This is something that is crucial for kids with cerebral palsy, not only for inclusion, but for recovery after surgery, working on flexibility and range of motion, and just getting exercise. I was a little discouraged because we didn’t have the resources for a therapy bike and we were already trying to raise money for her physical therapy sessions following her upcoming surgery.

briella-4

Dave Burton, the representative from Freedom Concepts I had been in communication with, suggested reaching out to Variety the Children’s Charity Detroit. When I emailed them to share our story, the executive director, Michelle Murphy, sent me some paperwork to apply for assistance getting a bike. Soon after submitting the application, Michelle wrote me back saying Variety was going to sponsor Briella for a bike. I cried that day. It was so amazing. I just balled. When the bike showed up a few weeks later, I cried again. There are people out there who care!

The smile on Briella’s face when she saw the bike was just awesome. I’ll never forget.

I cannot thank Variety and Freedom Concepts enough.

“Variety the Children’s Charity of Detroit is dedicated to enabling mobility for children with special needs through the Variety Bikes for Kids Program. With generous support from donors, Variety provides a select number of prescriptively modified adaptive bikes each year which allow children to experience therapeutic benefits while enjoying independence and freedom. We are so pleased to see Briella conquering challenges with her new bike — and always with a smile.”
-Michelle Murphy, Executive Director, Variety the Children’s Charity Detroit

Cruising Around the Block

briellas-bike-1

Briella has the DCP 12 model in her favorite color, purple. She’ll be able to continue using it for several years as she grows. Everything adjusts on it from the height of the seat, to the handlebar placement, to the straps and harnesses.

She’s very secure in it, so I don’t have to worry about her falling out.

There’s a function on it that allows my husband or I to push it, steer, and even brake from behind. Once she gets good at learning to ride and pedal by herself, that can come off and she can cruise on her own. It’s pretty awesome how adaptive it is and how much she’ll be able to use it and grow with it. We just got it in February, so we haven’t been able to take her out much yet because of the winter weather in Michigan. I took her around the block once and she actually began pedaling a little bit! I can’t wait to take her back out as soon as the weather warms up.

The Importance of Inclusion

briella-2

Now that she has the therapy bike, she will be able to participate in adventures and activities and feel more included among her peers.

This is not only vital to her well-being, but it also shows the outside world the importance of being adaptable and open-minded toward kids with disabilities.

“At Freedom Concepts, our greatest Joy is creating custom bikes that really capture the uniqueness of each child we serve. Our Freedom riders beam with pride while getting active in their neighborhoods, and it’s always so amazing to hear about local kids celebrating the rider as they are out finding their Freedom on sidewalks across the world.”
-Dave Burton, Territory Manager, Freedom Concepts

Editor’s Note: Follow Briella’s progress this year on Facebook and Instagram.

To find out how Freedom Concepts can help your child gain freedom and independence, fill out the “How To Buy” form by scrolling down to the bottom of their website.

FREEDOM LOGO_1

About the Authorbetsy-bailey-headshot

Betsy Bailey has a diverse background including experience in marketing research at American Express, business operations and client relations with 601am, travel and culinary writing with VegDining, and playing volleyball professionally overseas.

Betsy is excited to get back into writing, something she’s adored since childhood, and thoroughly enjoys the process of getting to know her interviewees. On top of her work with Wheel:Life, she also teaches students learning English as a second language, speaks French fluently, and travels any chance she gets!

Recently Published

chanda-5
»

The Chanda Plan Foundation:  Changing Lives Through Access to Integrative Therapy

Editor’s Note: When conventional medicine was failing quadriplegic ...

life-rolls-on-3
»

Founder of Life Rolls On Jesse Billauer Wants to Help You Catch a Wave

Editor’s Note:  Growing up in southern California, Jesse ...

tecla_bts_productshots-26
»

Tecla: Fostering Independence Through Access to Technology

Editor’s Note:  While studying biomedical engineering in his home ...

cure-hydrophilic-kit-1
»

New! A Pocket-Sized Cure Hydrophilic Kit Made for You

A new pocket-sized kit from Cure Medical is now available for people ...

adaptive-joel-4-cover
»

Super Leg Joel Ellen on Faith and Fitness After Limb Loss

Editor’s Note:  When athlete and fitness fanatic Joel Ellen ...

cheerful boy with disability at rehabilitation center for kids with special needs
»

From Frustration to Innovation:  How Universal Vests is Changing Industry Standards

While studying physical therapy, the founders of Universal Vests ...

anyone-can-dance-1
»

Comfort Conversations: Anyone Can Dance

Join us every other month for Comfort Conversations, a discussion ...

jerzee-wasylnuk-asr2011-odyssey-tripwire-shoot-june-25-2017-021
»

The Benefits of Your Child Getting Active with Adaptive Bike Riding

Parents of children living with disabilities:  Take a minute to ...

feeling freedom for disabled people
»

Our Top 5 Accessible Summer Vacation Destinations

It’s time to talk about summer vacation plans. If you like to have ...

the-life-of-a-service-dog10
»

A New Book Teaches Kids About the Life of a Service Dog

Editor’s Note:  As a single mom of a 7-year-old, Amy Sherwood was ...

abilities-expo-la-show
»

Win a Trip to the Boston Abilities Expo

Have you always wanted to attend an Abilities Expo but you don’t ...

dsc_1879
»

Wheel:Life and Comfort Medical Sponsor the Paradox Sports Adaptive Ice Climbing Trip

  Editor’s Note:  A little over a decade ago, a group of guys ...

cure-medical-kids-self-cath-cover-b
»

Norah Self-Caths in Kindergarten, Thanks to this Free Resource

It’s a given that kids who cath want to be like their friends at ...

Senior man in wheelchair outside in nature
»

The Healing Powers of Grounding Therapy for Wheelchair Users

Editor’s Note:  Having grown up on a farm in rural Montana, Clint ...

disabled-travel-special-needs
»

Cruising the Planet with Amputee Debra Kerper

Editor’s Note: When a bone infection complicated by lupus took ...

Being prepared for college is one thing, being prepared for college dating is another!
»

The Online Dating Experience for the Disabled

Dating is hard. Dating is really hard. If you have a disability, ...

briellas-bike-4
»

Inclusion, Adventure, and Therapy with Freedom Concepts

Editor’s Note: In 2014, Michigan residents Caroline Booth and Matt ...

wheelchair-client-machu-pichu
»

Where Do You Want to Go?

Have you always dreamt of seeing the Aurora Borealis in Alaska? Or ...

img_360910
»

TerrainHopper USA: Bringing Adventure and Freedom to People with Disabilities

Editor’s Note:  Born with osteogenesis imperfecta, Todd Lemay ...

paul-amadeus-lane8
»

Breaking Down Broadcasting Barriers with Paul Amadeus Lane

Editor’s Note: Growing up in Long Beach, California, Paul Amadeus ...

zebreda1
»

Zebreda Dunham Powers Through Challenges on the Pitch and in Life

Editor’s Note:  Born with arthrogryposis multiplex congenita, ...

img_0223
»

Adaptive Aerial Yoga Allows Wheelchair Users to Fly

  Editor’s Note: Texas native Sara Schaffer has been ...

take-a-look-at-this-heart-cover
»

Sex, Love, and Disability:  Ben Duffy’s New Documentary Exposes It All

Filmmaker Ben Duffy and Ajani “AJ” Murray met while working on a ...

Hospice nurse giving medicine to senior man in wheelchair
»

Why Nurses Care About DEHP in Catheters, and You Should Too

Have you noticed a growing awareness to be conscious about eating ...

img_0438
»

Amputee Bob Clausen Says If You Want Something Bad Enough, You Will Do It

Editor’s Note:  Widower and Navy veteran Rober “Bob” ...

img_3960
»

The Ms. Wheelchair California Pageant: A Life-Changing Experience

As the Ms. Wheelchair California Leadership Institute, formerly known ...

key-support-systems-1
»

Comfort Conversations: Support Systems Are Key After a Life-Altering Tragedy

Having key support systems after a life-altering injury is crucial. ...

sheri-melander-smith-6
»

Sheri Melander-Smith on Living Your Best Life

Editor’s Note:  Sheri Melander-Smith was born with a vascular ...

wheelchair-boarding
»

5 Extreme Activities to Add to Your Bucket List

Have you already tried all of the typical adaptive sports available ...

best-of-2017-cover
»

Reflections and Lessons Learned in 2017

We hope your 2017 was as enlightening and empowering as ours was here ...

styledwel-ms-1
»

Living with MS: One Family’s Solution to Enjoying Life Events Again

Dave was diagnosed with multiple sclerosis in 1999 and for the first ...

tips-to-help-teach-your-child-about-self-catheterization-1
»

4 Tips to Help Teach Your Child About Self-Catheterization

At a certain age, kids will be the first to tell you that they want ...

waving happy young adult woman on wheelchair in the city in winter at sunset
»

Winter Weather Preparedness Tips for Wheelchair Users

Are you dreading this winter season? Dealing with slushy, icy, snowy, ...

adaptive-climbing-10
»

Making Adaptive Climbing More Accessible with Arthur Torrey

Editor’s Note: When a tree-cutting accident in 2010 led to broken ...

woman on wheelchair entering the platform
»

Barbara Cramer – 75 Years of Defying Stereotypes

Editor’s Note:  An earlier version of this post may have left the ...

falmouth-road-race-2017
»

Serving the Spina Bifida Community with the SBAGNE

I serve as the executive director of the SBAGNE. One of my primary ...

spinal-cord-injury-720x400
»

Comfort Medical is Helping People to Achieve a Healthier and Happier Lifestyle

If you’re an avid Wheel:Life reader, you may remember that we ...

stephanie-woodward-9
»

Advocating for Disability Rights with Stephanie Woodward and CDR

Editor’s Note: During a summer internship at the Center for ...

handi-capable-fitness8
»

Building Strength and Confidence with Handi Capable Fitness

Editor’s Note: A botched hernia operation during infancy left James ...

adaptive-bike1
»

Comfort Medical Sponsors Freedom Concepts to Help You Win An Adaptive Bike

Have you always dreamt of gliding down the street with the wind in ...

abilities-expo-toronto-2
»

Experience It All At the Abilities Expo!

Days are becoming shorter, nights longer, and the holiday season is ...

me_northeast-passage
»

ParaSportsLive: Bringing Adaptive Sports Coverage to the World

Editor’s Note:  When wheelchair user Tony Jackson’s original ...

cure-medical-october
»

Introducing the New Cure Ultra Coude Intermittent Catheter for Men

Cure Medical has unveiled the new 16-inch Cure Ultra® Coude ...

each-by-name-1
»

Get Ready for Rolling With Me’s Each By Name Conference

Wheel:Life, Comfort Medical, and Rolling With Me is excited to ...

smooth-sailing-with-david-gaston9
»

Smooth Sailing with David Gaston

Editor’s Note:  A Texas coast native, David Gaston has been in and ...

Husband and handicapped wife taking stroll in park alley
»

Gain Traction This Fall with National Ramp

Summer is officially over and dreary winter weather is on its way. ...

wheelchair-dance-organization-21
»

Wheelchair Dancers Organization Says Everybody Can Dance!

When life-long dancer Beverly Weurding was diagnosed with limb-girdle ...

malaise-wheelchair-fitness4
»

Pursuing Health and Happiness with Malaise Wheelchair Fitness

Editor’s Note: Justin Malaise grew up in small-town Wisconsin as a ...

kim-brown-cover
»

Former Ms. Wheelchair Illinois Continues to be a Voice for the Community

Editor’s Note: Born with spina bifida, Kim Brown has been a ...

img_00261
»

Dare to Discover the World of Accessible Travel With Handiscover

Editor’s Note: Sebastien Archambeaud has always loved traveling, so ...

pediatric-hydrophilic-cure-catheter1
»

Made for Kids! The Pediatric Hydrophilic Cure Catheter + Free Backpack Program

Parents only want what’s best for their children and keeping them ...

jhudson-featured
»

Wheeling, Driving, Bowling, Preaching, Parenting…Johnny Hudson Does It All Hands-free!

Editor’s Note: Johnny Hudson was born in 1977 with unforeseen ...

Pat Dougherty explains FreeWheel to a new fan at a recent Abilities Expo.
»

The Abilities Expo is Coming To Boston!

Boston awaits with open arms. This September 8–10, head over to the ...

margarita-7
»

Comfort Conversations: Change Starts with You – Becoming an Advocate

Join us every other month for Comfort Conversations, a discussion ...

wheelchairtravel14
»

WheelchairTravel.org: Blazing the Trail Towards an Accessible World  

Editor’s Note: After sustaining severe burns during a car accident ...

ag-featured
»

The Artfully Gifted Foundation – Serving Entrepreneurs with Disabilities

Editor’s Note: The Artfully Gifted Foundation (a non-profit) was ...

jose-gonzalez-on-how-the-scrs-il-can-help-you-live-independently24
»

How the SCRS-IL Can Help You Live Independently

Editor’s Note: When triple degree holder Jose Gonzalez returned ...

peter-arballo-1
»

Peter Arballo Never Gave Up on Himself — Neither Should You

Editor’s Note: Peter Arballo was born in Southern California to ...

michael-johnson-racing-8
»

Full Speed Ahead with Endurance Racer Michael Johnson

Editor’s Note: Michael Johnson of Lansing, Michigan, started racing ...

monica-vickers9
»

The Extraordinary Life of Triple Amputee Monica Vickers

Editor’s Note: Monica Vickers was born in 1954 missing both legs ...

rick-hayden-rolls-on-capitol-hill-for-your-rights1
»

Rick Hayden Rolls on Capitol Hill for Your Rights

When Rick Hayden visited the US Capitol last week, he went with your ...

abilities-expo-chicago-2017
»

Gear Up for Abilities Expo Chicago

Calling all Midwesterners — Abilities Expo is coming to Chicago! As ...

angel-city-sports-12
»

Run, Jump, and Throw Stuff with Angel City Sports

Editor’s Note: Clayton Frech is the CEO and founder of Los ...

1coach-koz2
»

Sled Hockey with Coach Koz

Editor’s Note: Sled hockey (also known as sledge hockey) is almost ...

Summer Solutions with STYLEDWEL
»

Summer Solutions with STYLEDWEL

Editor’s Note: Mary Marshall, founder of STYLEDWEL, created ...

kristina-rhoades11
»

Following Your Inner Guidance with Kristina Rhoades and How National Ramp is Helping Her Do It

Editor’s Note: Kristina Rhoades is a mom, wife, speaker, writer, ...

men who use wheelchairs
»

Comfort Conversations: Finding Encouragement Through Peer Support Groups

Join us every other month for Comfort Conversations, a discussion ...

wheellife1
»

Allen Beauchamp on Life, Love and Hockey

My name is Allen Beauchamp, and I’m 43 years old. I live in a ...

altolife9
»

Yoocan Get Empowered!

Editor’s Note: Inspired by a family member with disabilities, Moshe ...

cure-medical-catheter
»

Introducing the Cure Ultra: Ready to Use Catheter for Men

Cure Medical has unveiled the new 16-inch Cure Ultra™ Intermittent ...

manual-wheelchair-skills-800
»

Refuel and Rejuvenate At Abilities Expo New York Metro

East coasters, or anyone within striking distance, gear up for ...

criptado7
»

Criptaedo: Breaking Boards and Barriers

Editor’s note: Paul Brailer, aka Criptaedo, was born with spina ...

stella5_small
»

Rolling Forward with Amputee Advocate Stella Sieber

I’m currently 63 years old and live in Durham, North Carolina. ...

mallory_black-and-white-quickie-photo-shoot_july-2016
»

Stroke by Stroke: Moving Forward with Mallory Weggemann

Editor’s Note: At 18 years old, Mallory Weggemann walked into the ...

Margarita Cover Photo
»

Comfort Conversations: Finding Your New Normal After a Spinal Cord injury

Join us every other month for Comfort Conversations, a discussion ...

wheelchair-daddy-1
»

Glenn Moscoso: Wheelchair Daddy

Editor’s note:  Glenn Moscoso is a husband and father living with ...

national-ramp-cover-photo
»

Avoiding Slippery Slopes with Garth Walker and National Ramp

Editor’s Note: After selling his prior business, Garth Walker went ...

national-sports-center-for-the-disabled4
»

The National Sports Center for the Disabled: Finding Self-Confidence through Personal Challenge

Editor’s Note: The National Sports Center for the Disabled, founded ...

susies-travels
»

Wheeling around the World with Susie Twydell

Editor’s Note: Based in England, Susie Twydell, an avid traveler ...

Wheelchair walk
»

Amplitude Media Group: Closing the Information Gap

Wheel:Life is thrilled to announce their newest community partner, ...

wow-2
»

Accessible Hiking, Camping and Fishing? WOW!  

Editor’s Note: Wilderness on Wheels (WOW) is a foundation and a ...

the-woody-foundation-6
»

Comfort Conversations: Events, Free Packs, and More with James “Woody” Beckham

Editor’s Note: The Woody Foundation is a 501(c)(3) non-profit ...

S
»

Jenn Sexton Shares Her Secret for Independence: An Extra Long Cure Catheter

Jenn Sexton was five weeks pregnant when she and her husband, Thomas, ...

img_2236glen-schlotterbeck
»

Glen Schlotterbeck: Reinvent Yourself!

Editors note: As a graduate of the US Air Force Academy, Glen ...

The-Abilities-Expo-6
»

Educate, Energize, and Enlighten at Abilities Expo Los Angeles

The Abilities Expo is back in Los Angeles and gearing up to show you ...

14juan-sebastian
»

Juan Sebastian Betancourt: Changing the Way Businesses Serve People with Disabilities

Editor’s Note: Juan Betancourt is on a path to change the world for ...

yogya-borobudur_ai
»

AccessibleIndonesia: Making Travel Accessible in a Non-Accessible Country

Editor’s note: Kerstin Beise, a German physiotherapist, who also ...

hydred-cover
»

A Lesson on Living Life to the Fullest with Hydred Makabali

Editor’s note: Hydred Makabali, born and raised in England and now ...

Up/Down Team Champions (Top L to R) Shane Hayden, Harold Collins (Seated L to R) Gary Bowling, Kenneth Hill, and Don Law
»

Knocking Down The Pins of Life with Wheelchair Bowling Champion Kenneth Hill

Editor’s Note: Fifty-year-old Kenneth Hill from Plainfield, ...

10-2take-your-wings-and-fly-with-denise-horn
»

Take Your Wings and Fly with Denise Horn

Editor’s Note: Fifty-six-year-old Denise Horn of Janesville, ...

ashley-hudson
»

Ashley Hutson Wilson Beat a Small Chance of Survival to Live a Full Life

Editor’s Note: Thirty-one year old Ashley Hutson Wilson from Kyle, ...

wheely-guitars-mel-header
»

Jam with Mel Bergman: Creator of Wheely Guitars

Editor’s Note: Mel Bergman of Camarillo, California, is the ...

gary-boxing-friend
»

Gary “Tiger” Balletto: Champion Prize Fighter Who Rolls with the Punches

Editor’s Note: You can capture a ferocious wild tiger and put him ...

9 Robby Heisner
»

Meet Robby Heisner: Creative Entrepreneur on Wheels

Editor’s Note: Robby Heisner of Smyrna, Georgia ...

Joseph Logar1
»

The National Rifle Association’s Adaptive Shooting Program with Dr. Joseph Logar

Dr. Joseph Logar Editor’s Note: Dr. Joseph Logar has his doctorate ...

rollettes-2
»

The Rollettes Take On an E.P.I.C. Project to Empower Others

Editor’s Note: Chances are, you’ve seen these ladies ...

medicare-access-header
»

Speak Up Now to Save Your Wheelchair: Fight Medicare Cuts

Your window is narrowing to preserve access to mobility equipment – ...

engineered for adventure GRIT
»

Go Further Together with GRIT: Stories of Community Support

Our friends at GRIT, the makers of the revolutionary Freedom Chair, ...

military-gang
»

Paralyzed Veteran’s Mom Awarded Dream Trip by ElDorado Mobility

Editor’s Note: Serving our country as a military service member is ...

4Kenneth Perry
»

Wheelchair Karate: Attack the Attacker with Kenneth Perry

Editor’s Note: Kenneth Perry from Philadelphia, Pennsylvania, ...

5 Tom Cannalonga
»

Ditch Your Chair to Sit-Ski the Slopes with Tom Cannalonga 

Editor’s Note: Fifty-two-year-old Tom Cannalonga lives in Edison, ...

wlbannerFBfall
»

Welcome to Wheel:Life

We are so glad you’re here! Wheel:Life is a global initiative ...