It is after midnight on many of my friends' Facebook pages. The June 17 CDKL5 awareness posts are starting to consume my newsfeed. I read them and the tears fill my eyes. We are all on different journies, yet the same path, and no matter what, it's a heartbreaking one at that. What is there to say? How do we really make others aware of the significant impact of one teensie tiny genetic error? There is no one storming the streets demanding a cure, yet some of us wish we could storm the gates of heaven to see the children who were stolen from us. There is no one who has found potential cures skipping every potential phase of a trial in order to speedily find a way for those children who are left here to not have to continue to live in silence, enduring thousands of seizures, and with significant developmental delays; yet many parents and family members attempt to make the world aware that something is needed by sharing their individual stories.
I honestly haven't figure out what it takes to get onto Ellen or make a big enough deal that anyone who is a someone will fight for our rare cause. A cause that isn't reaching into the homes of every single person in this world due to any lack of trying. I assure you every parent of a child diagnosed with CDKL5 Deficiency Disorder does their damnedest every day of their lives to try to eradicate the nasty impact of this disorder on their child. It is literally a fight to the death type of attempt, the worst game of beat the clock, and yet sadly many best efforts are just that...efforts that ultimately come up short because sometimes your best just isn't enough.
We have been lucky to have been able to "celebrate" CDKL5 Awareness day for every single year of Sonzee's life and now the first of her death. Ironically when she was a baby we were told by so many parents of diagnosed children how lucky we were to have a diagnosis at such a young age. I never felt their extended joy on the topic, and thankfully those parents don't share the same pain we are living now without her. While there is a sense of relief in having an answer as to why your child is seizing, why they are not making eye contact, why they are not meeting developmental milestones, why they are struggling with feeding issues, why they are unable to be fully functional members of society, there is absolutely not one ounce of luck that comes with having a CDKL5 diagnosis, no matter the age of diagnosis.
I wish June 17 wasn't another day that is tainted forever. I wish June 17 meant more to more people and that all of the awareness efforts were not in vain. I wish that June 17, 2020 was the very last CDKL5 Deficiency Disorder awareness day that was needed to share with the world the devastating effects of a CDKL5 mutation. And for now, we are left to making Facebook posts that hopefully people share and to dressing in lime green, with the knowledge that some of us don't even have our children to do that anymore.
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