Like the Morrissey song, I wish every day was like Sunday. I love making peace with the chaos that the week before has left. It has been such a beautiful day today - windows open, listening to Billie Holiday, getting lots of smiles from the little guys. If I had a chance to pause life, it would be right now - to soak this face in forever:
So a few weeks back, we attended the ribbon cutting for an adaptive cafe at the UCF campus. The cafe is collaborative effort between Cole Galloway and Dr Jennifer Tucker, the team that created the UCF Go Baby Go program that built Curren's super cool car last year. It provides physical and vocational therapy for people with mobility challenges by incorporating a specially designed harness system that allows workers to move and function freely. We were asked to bring Curren to the ribbon cutting, to demonstrate the infant harness system, and were honored to be part of the event! Curren's brother and cousin came along to cheer him on, and it was so wonderful to see him at eye level with his peers. The harness allows him freedom and support, but most importantly brings his social experience and personal interactions to a whole new level Thank you UCF and Cole Galloway for your pivotal efforts. I can't wait to see the harness system used everywhere!
Curren is also doing lots of new, exciting things. He has starting waving hi and bye again, and he is doing lots of mimicking and imitation right now. He is working so hard, and making promising gains. All these wonderful people that are part of our team are helping Curren to be his very best, and it's pretty awesome!
This weekend, I attended a special education conference hosted by Brevard Public Schools and the Interagency Council of Brevard. I was super impressed by the amount of resources available and the quality of information presented. We connected with a few wonderful people, and received lots of helpful tips. The keynote speaker, Ashley McGrath, was especially impressive. A young woman with a rare genetic disorder affecting her bones and muscles, Ashley shared her story about constantly defying odds. Her autobiography, UnabASHed By Disability, is available for purchase on amazon (I ordered it last night and am really looking forward to reading it!)
As February draws to a close, a very exciting day is right around the corner. A rare day of itself, February 29th is World Rare Disease Day. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. Here are some staggering facts about rare disease.
*Rare diseases impact more people than cancer and AIDS combined
I would love to see Curren's friends showing support for him and all others fighting rare diseases! Global Genes has some great social media graphics, I've included some of them at the end of this post. The World Rare Disease Day website also has some wonderful information and personal stories of those fighting rare disease (Curren's story is included on their website!) Thank you everyone!
I am stick-a-fork-in-me done right now. But we were a part of something so awesome this past weekend that I know I won't be able to go to sleep until I tell the world about it. So here it goes (please don't judge me, I am just slightly above zombie mode due to a teething and sick and not sleeping toddler, the poisonous coral snake that was in my laundry room over the weekend, Curren's multiple trips to ER last week, the Christmas tree collapse earlier last week that absolutely sounded like a break-in at 2:00 am - need I go on (I'm sure I missed 6 or 7 other ridiculous moments of the week?)
Curren was a participant in the Go Baby Go program at UCF this weekend. The goal - to provide mobility to children with disabilities through low-cost modifications to off-the-shelf power wheel riding cars. The results were simply amazing. There were 16 lucky kiddos that had a custom car built just for them, from a team of volunteers consisting of physical therapists, engineering students, various professionals, and other community supporters. There was so much enthusiasm and excitement at this event, and it was very touching to see so many community members turn out to help these little guys get such a cool and unique gift.
Go Baby Go was started by by Cole Galloway, a physical therapist and professor at the University of Delaware. He began his mobility studies paired with a mechanical engineer, and they started off by building power mobility robots. But with the price of custom robots so high, they were inaccessible to most families. Even pediatric power wheelchairs run about $5000 a pop. So Galloway's next move was to create fun, affordable toddler ride-on cars customized by using PVC piping, pool noodles, kick-boards, and minor electrical modifications for under $200 a vehicle. Fast forward to now, and he's traveling the country, hosting fabulous events like the one we attended at UCF last Friday.
Our awesome build team (called Team Curren!) included 3 physical therapy students, a physical therapy student's mother, and an engineering student. They transformed an off-the-shelf Lightning McQueen power wheels toy into a moving machine for Curren, customized with special touches, like our large Bruce (the shark from Finding Nemo) sticker and Storm Trooper kickboard back.
While our incredible build team was busy making our vehicle, we got to meet new friends and try out another one of Galloway's creations - an infant harness system, supported from a simple support structure above that allows freedom of movement almost like a bridge crane - forward, backward, left, and right - all seamlessly. This harness and support system was utilized at the University of Delaware's Go Baby Go Coffee Shop, where adults with traumatic brain and spinal cord injuries engage in vocational rehabilitation and work at the cafe.
At the end of the day, Curren tried out his car for the first time. He was at first pretty perplexed by the idea of being able to move by pressing a button, but he quickly caught on and loved the idea of free movement. All the kiddos got together for a group picture, and it was overwhelming to see all the little ones lined up in their customized set of wheels. I am so incredibly grateful to Cole Galloway, UCF, and Team Curren for including us in this awesome event. Curren has been sporting his wheels every day since the build.
For more information on Go Baby Go, including upcoming events and how to participate or volunteer, be sure to check out the links below:
And for a little more background on Cole Galloway, check out his TEDMED, "A Movement for Mobility":
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.