Tomorrow my blog will be 1 year old, how exciting is that? I started this blog searching for answers, and ironically we received a diagnosis within the first month. But moving from the past and on to the present - we have been involved in so many new and amazing things over the past 6 weeks. It's hard to believe we have jam packed all this excitement in such a short period of time. Curren went to New York to see our new incredible doctor who is actively researching HIVEP2, he was on national television as part of the Beyond the Diagnosis art exhibit, he completed a 3-week intensive therapy program sponsored by the Cove Merchants Association from the Canaveral Mac Attack tournament, he turned 3 years old, and he started an early exceptional learning program at a local public school. We are all pooped, but this is a marathon and not a sprint - so we keep on going!
Our trip to New York was wonderful. We stayed in a small beach town in New Jersey with good friends for a few days, and our friends Ryann and Heather came into town and met us (Ryann has the same diagnosis as Curren). We went into the city for Curren's appointment at New York Presbyterian Children's Hospital, and visited the Guggenheim, the Cooper Hewitt, Central Park, and the Seaglass Carousel at Battery Park. The appointment with Dr Chung and her team was wonderful, and we are working together to plan a virtual family conference for all the families with a HIVEP2 diagnosis.
Once we got home from our trip, we found out that Curren was going to be included in a nationally televised program on a traveling art installation call Beyond the Diagnosis. We are so honored to be included in the collection and to help put a face on rare disease. Curren's portrait was completed just before the program aired, so his painting wasn't included in the segment, but he had a little photo cameo at the introduction to the story. Curren's painting is an incredible watercolor that beautifully captures his essence, and it is possibly one of the kindest gifts anyone could give us! His artist is a very accomplished retired neuroscientist in England. We have also already been contacted by a genetics professor who saw the exhibit, and her students will be doing a project on HIVEP2 and interviewing us! We can't wait to see where Curren's portrait travels and how his painting will raise awareness for HIVEP2 disorder and rare diseases.
Curren had the opportunity to complete a 3-week intensive physical therapy program at Ability Plus using a therasuit compression body orthosis, thanks to the proceeds from the Canaveral Mac Attack and the Cove Merchants Association. He went to therapy from 9:00-12:00 every day for 3 weeks. The therasuit helps to stabilize movement, improves body awareness, provides dynamic correction, and supports weak muscles. When used intensively, it accelerates gross and fine motor skill development. We saw a huge improvement in Curren's mobility, strength, and coordination throughout the program. I feel that he accomplished in 3 weeks what would typically take him 3-4 months. The biggest improvement is that Curren is initiating steps now (with upper body support). His lower body has always been much weaker that his upper body and it wonderful to see those feet starting to work! It wasn't easy to do that much physical therapy every day, and we are so proud of Curren for sticking it out and making it all the way through each day!
Curren also had a birthday last month. We had a sweet puppy party, and there were 4 dogs in attendance. We also went to Animal Kingdom to celebrate.
Since Curren turned three last month, he aged out of Space Coast Early Steps (so sad!) and started an early exceptional learning program at a local public school. He attends school 3 days a week, and will continue to go to Ability Plus for PT, OT, and ST the other 2 days. I have been nervous about this transition for over a year, so you can imagine my relief when we realized his teacher and assistant are so kind and caring and very experienced. Curren will also get PT, OT, and ST at school, as well as adaptive PE, aqua therapy in an indoor heated pool, circle time, and more. We are so excited for Curren to get this much enrichment throughout the week and look forward to watching him learn and grow in this environment!
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.