Our dream in creating Kiera’s Hope Project is to share what we’ve learned from Kiera and many other children over the years, in the hope that it will help other families struggling with this devastating disorder.  We are Kiera’s voice, but we are also here to help her and all children with CDKL5 disorder find their own voice, their emotional and intellectual freedom, and if we are lucky, physical freedom from debilitating seizures.  In honor of Kiera, we are pursuing research opportunities and projects in clinical areas such as communication, epilepsy and neuroplasticity to name a few.  We also believe that Kiera and all children with CDKL5 and other rare disorders have a deep need for their heart, mind and soul to be enriched through the arts and humanities.  Therefore, we are also pursuing opportunities to open up the world of music, theater, art and culture to children like Kiera.  We think you will be inspired by Kiera to never allow anyone to put limitations on your child’s potential.   I hope you will learn about possibilities and opportunities that you might not have found already.  Our CDKL5 disorder family is growing by the day, and we believe that we have a responsibility to help those we can, and we believe in trying to make a difference. 

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Kiera Grace is an 18 year old beautiful princess who was born with CDKL5 Deficiency Disorder, and she has taught the world of CDKL5 research so much!  Kiera is considered to be higher functioning for CDKL5 disorder, but we don’t know for sure the reason why.  Some speculate it’s because of her particular mutation and location, but we think it’s also because Kiera, like all children with CDKL5,  has found a way to let her light and soul shine through!  We also know that Kiera has made incredible progress from the intensive therapies we have enrolled her in from age two, and which she has endured, and thrived, all these years.  We have learned so much along the way because Kiera has shown us what’s possible.  In recent years, Kiera has had some regression in her skills, but we remain hopeful that this is temporary.

Kiera struggles with severely intractable epilepsy, and has seizures every single day, but if you look closely, you’ll see a strong, spirited and bright young lady who is locked inside her fragile and broken body!  Never underestimate a child, or the brain’s capacity to re-wire and adapt to the circumstances, no matter your age.

She struggles with communication, not because she has nothing to say, but because she has apraxia.  Her muscles won’t let her form words and sentences easily, even though in her brain she is “talking” and knows what she wants to say.   This is one of the great tragedies of CDKL5 disorder, to be silenced and betrayed by your body.  Just because a person can’t talk doesn’t mean they can’t think, feel, understand, want, need, wish or hope.  Kiera is alive inside! She is a vibrant and intelligent young lady who has a wonderful sense of humor, a deep love for music, and she is in awe of the moon and stars and enjoys stargazing with her mom. Kiera has incredible courage and determination and a heart full of love for other people. 

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We know Kiera’s life matters. 

Here is her journey.

Love is where we start!