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!
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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.