And just like that, 2016 is drawing to a close. It has been a dynamic year of juxtapositions, with so many exciting new developments for Curren. It is also hard not to feel bittersweet, as I reflect on my hopes as we started the year. Would this be the year Curren starts to walk? Will he say a "first" word again, and keep it? I could not be more proud of the solid progress Curren is making developmentally, but it stings as reality sets in and the window for these milestones appears to be closing. Sometimes life feels like it is flying by and we are trying to just find a stable footing in the dust in order to take the next step. But it does not matter how slowly you go, as long as you do not stop.
We have had many beautiful moments this year. Curren started using a wheelchair, and it has given him his first real sense of independence. He has now mastered moving forward, now we just need to work on turning! We transitioned into a 3-day exceptional education public school program and are so thrilled with the learning opportunities and care that Curren is receiving. We also traveled to Baltimore and New York to meet with experts and have made wonderful connections through that process. As a result, Curren was featured in the Wall Street Journal in a story about Dr Chung, and we organized our first HIVEP2 virtual family conference, with 5 families and many researchers and clinicians in attendence. There are many new opportunities on the horizon and the future is looking very bright.
I think the most difficult aspect of this past year really boils down to one issue - the challenge of communication with a non-verbal child. Any other problem is just compounded when we are not able to understand what Curren is trying to tell us. Last night, Curren cried for hours before he finally fell asleep and there was no way for me to understand what was wrong, what was hurting, or what he was feeling. At times, the lack of effective communication can be heartbreaking. Bigger still, is the task of maintaining an almost irrational faith in society; that my son's vulnerability will not be taken advantage of when I am not there to protect him,
Not being able to rely on verbal communication opens the door to many other meaningful nuances that would most likely be otherwise overlooked. Curren has developed a range of inflection that is a language of it's own. He speaks more like a song bird, with changes in pitch and tempo to indicate different emotions, Curren has also become very good at mimicking and echoing intonation and cadence. It is his way of engaging people. Because he can't yet verbally communicate, Curren relies on his charm to draw attention, and he is developing quite a repertoire of interactions. Without words, we are forced to read more into body language and expression, and it is so much more powerful than words. Five pats on the back means "I love you", a dramatic shake of the head actually means "I really like this" instead of no, and a crooked smile to the right means "I am proud of what I did". It is a beautifully meaningful way of communicating.
One of my favorite movie characters said, “Do you know whatcha gotta do, when life gets you down? Just keep swimming, just keep swimming.” (thank you Dory and Ellen)! Whether you are feeling lost in unfamiliar territory, fighting battles that seem unbearable, or struggling in a rut and you feel you can’t overcome - these are words that symbolize what it means to truly persevere to the end. Moving into 2017, there is so much to be excited about, but when the challenges come, we will “just keep swimming, just keep swimming”. Happy New Year to everyone!
So I am weeks late with this post, but a lot has happened in the past month - a new president-elect, a new baby nephew, the thanksgiving holiday, and the first HIVEP2 family conference (more on that later!). But on November 8th, our incredible doctor in New York was featured in the Wall Street Journal. As part of the article, Curren and HIVEP disorder were mentioned! Dr Chung has provided motivation for me to continue to fight for Curren and HIVEP2 advocacy. Between the research opportunities and family conferences, we have so many more resources available to us than what you would expect for a community of only twelve patients. Rare disease patients can often feel isolated, but the opportunities that Dr Chung provides our community gives me hope for the future, and they have the potential to change my son's trajectory in life. We are so honored and blessed to be under Dr Chung and her team's care, and are beyond thrilled to have HIVEP2 mentioned in a national newspaper.
From the Wall Street Journal on November 8th, 2016, "The Doctors who Solve Medical Mysteries":
Our HIVEP2 community also had our first virtual family conference this past week, and it was so encouraging to connect with these families and researchers. I cannot say enough amazing things about the Simons VIP project and the work they are doing to further advance our understanding of the genetic components underlying autism and developmental disabilities. We can't wait to see how our community will grow in 2017.
In other exciting news, the revised 21st Century Cures Act passed by a sweeping 392-26 vote in the House of Representatives last week! While not everything that would have hugely benefited the rare disease community was included (such as the OPEN Act, additional resources for developing natural history registries for rare diseases, and more robust funding for the NIH and FDA), the revised bill is still a great step forward for the development of therapies for rare diseases. The White House is urging the Senate to promptly pass this bill so that the President can sign it before the end of the year. Thank you all for the support I receiving following my last blog post on the 21st Century Cures Act.
Most exciting of all, Curren has been getting used to his new wheelchair over the past month. Within the past few days, it has all come together and he is able to push his chair all by himself. This is short of incredible, as many things that most find easy can be incredibly challenging for Curren. After 3 years, my little guy is finally able to move around without relying on others, and it is the greatest feeling in the world!
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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.