We had a great Thanksgiving day with some close friends of ours and then we put the big kids to sleep. Sonzee fell asleep in her favorite spot on the floor and then I went onto Facebook. As one of the admins of the CDKL5 support group I receive notifications when a person makes a post. I typically pop over to see what information is being shared or what question is being asked...and that's when I read the news. The news I foreshadowed as the season began to change almost a month ago, the news that the entire CDKL5 family dreads...the news that informs us that we have lost another precious CDKL5 family member.
Instantly my heart begins to ache as it simultaneously breaks, my chest begins to tighten, and my pulse increases. Unfortunately I know this feeling all too well because our CDKL5 family endures these losses far too often. It is a mixture of pain for the family, panic that we could be next, relief for the child that he (in this case) is no longer suffering, anger that this child and his family had to deal with CDKL5, and sheer frustration that in 2016 science hasn't found a way to fix or eliminate genetic mutations such as CDKL5.
No matter how optimistic, hopeful, or positive we are as parents of a child with a CDKL5 mutation there is no winning. We do our best to make our children as happy and loved as possible. We give them as many opportunities to thrive as we possibly can. We make decisions that will hopefully only increase our child's quality of life. But in the end no matter what we do, we can't beat the CDKL5 mutations themselves.
As the holiday season officially begins as well as #GivingTuesday this Tuesday, I ask you all to consider giving a tax deductible donation to Sonya's Story to help fund crucial research (such as keeping Hope4Harper's cell line maintained for a year) so that posts like this one don't have to continue happening. I ask you to consider buying Sonya's Story and CDKL5 apparel to help spread awareness of CDKL5 (all proceeds from those sales go directly to Sonya's Story to be given to research institutions to help us find a cure). I encourage you to help us find a cure!
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