It’s so hard to know what to say at this moment. I seem to have too many words and yet, not enough. When I think of Claire, I think of love. I think of light, of strength, and of laughter. I met Claire when she was just a little peanut of a girl and she, Colleen, and baby Chloe (that’s how long ago it was) came to visit Kid Quest as a possible after school program for Claire, and later I was with her in school. What an extraordinary girl and what an amazing family! I didn’t know much about Rett Syndrome when I first met her, but I researched as much as I could. But of course, Claire taught me more than any book or article could, not only about Rett Syndrome, but really, about life and what perseverance and determination mean. I don’t think I realized at the beginning just what an effect she was going to have on my life. I have so many wonderful memories through the years, of our time at Kid Quest, reading Green Eggs and Ham and getting her to laugh that laugh from the gut, that lit up her face and the room, hanging out in the garden, singing and walking and picking flowers to put in her hair, listening to music, and dancing with her. That gave her a laugh too, watching me dance. I remember when I first began learning how to feed her and getting that first look, that said, “oh brother, I’ve got to teach another one.”, but then getting that smile when I did it right. And oh, the sauerkraut! She knew I really disliked it, and when she had it in her lunch at school, which was often, I’d look at her when I saw it and she would almost always smirk or outright laugh when she saw me struggle with it. Claire had the best sense of humor, whether she was telling a joke on her device, or just giving a look or a smirk at just the right moment and sending us both into a giggle fest. Sometimes others were in on the joke, sometimes it was just between her and I. I remember each morning waiting for her to get to school, I looked forward to which pair of sunglasses, cool t-shirt, or snazzy pair of shoes she’d have on, and wondering which it would be. Some days it was all three. So many moments, too many to count, and as I think of them now, I smile and I am grateful for every single one. I remember the tough days and moments too, with seizures. I would watch her sometimes try to fight them off, or after she had one, sometimes bounce back and be ready to rock and roll. I was truly in awe of her. I learned that she just needed someone there to hold her hand, talk her through it, and just be there. I am thankful that Claire trusted me enough to be that person. I will be forever grateful to have known her, to have learned from her, to have been with her through fun times and tough times, to have shared so much with her, and I will always, always remember her, perhaps at times with tears, but always with a smile. When I hear a Beach Boys or Beatles song, or see something Disney, or see a cool pair of sunglasses, or countless other things, I will think of Claire and I will smile. Light, strength, laughter, love...Claire.

It's been such a challenge putting words onto paper about Claire, because she was just too fabulous for words. Claire is such a bright star and I am forever grateful to have known her. Her intelligence, wicked sense of humor, kindness, tenacity and grace all made her such a joy to be around. Claire was so young when we met at Kid Quest, but everyone who worked with Claire understood that we were in the presence of a very special person. Old soul doesn't even begin to describe the magic of Claire. It was clear from the first day we met that Claire was absolutely adored by her family, but that Colleen, Jared and Chloe not only loved and adored Claire, they also saw her authentic self and made sure Claire was surrounded by others who did too.
Over the years, all of our new Kid Quest staff were hazed by Claire; she'd ignore you if she wasn't sure about you yet, smile if she liked you, and give you a million micro-expressions in between, but that special Claire laugh was the grand prize. Claire loved making us laugh and laughing at us in return. Claire had inside jokes with so many Kid Quest staff and participants, and yet had that rare ability to make everyone feel so special. Her confidence was so magnetic, everyone wanted to hang out with Claire. Claire's sense of self was so strong, and it was so fun to watch her interests grow over the years from tongue twister nursery rhymes to novels. I'll never forget when Colleen dropped Claire off at Kid Quest one day years ago and said Claire was "all about the Disney villains now", which Claire confirmed with a huge grin and that eyebrow raise that meant mischief. Even during tough times, like while resting and reading together after a particularly bad seizure it was so humbling to just sit and be with Claire in her powerful presence.
Claire taught us all so much and gave us so much love. You will always be with us Claire, whenever we sing The Beatles or Cat Stevens songs, or watch Disney movies or read poetry, whenever there is magic and joy you will be there.

ONE DAY...


The halls are empty
your books are gone
It’s all in memory
That’s keeping us strong

Those precious smiles
And twinkle in your eye
You could see them for miles
And now in the sky

The questions we ask
Are not yes or no
But why couldn’t it last
Why did you go

The time we had
Was precious to all
Some good some sad
But mostly a ball

We miss you Claire
Words just can’t say
We will see you up there
Again one day

Forever missed & Never forgotten

I first met Claire and her family when they moved from the Santa Cruz area to Temecula in 2017. I got to know Claire on such a deep level as her 5th grade teacher, despite it being such a short time, I can’t even begin to tell you how many incredible and miraculous moments we had. There were so many fun times with this Disney loving, sassy, and boy crazy young lady, it was hard not to want to write about them all.  Claire will forever hold a place in my heart and she has truly changed my life for the better. To capture the true essence of what I mean, here is a story I must share. To this day, when I reflect back on this moment, it still brings tears to my eyes but also makes me smile. 
As we all know, Clarie could have some pretty rough seizures that would make it difficult for her to breathe at times and we would all go into our medical emergency mode. One afternoon, I received a call that my daughter, who has mental health issues, was in crisis and I needed to get to her immediately. At the same time, Claire had just had a seizure and we could tell she was going to have another and was having a hard time. I was trying to coordinate with my AP who came down and said she would cover me, but I was not about to leave Clarie at that point. I asked Claire if she was going to have another seizure and she looked into my eyes with such intensity, I could tell she knew I was worried about her and my daughter and could feel my stress. She used her eyes by looking left, to tell me no, she wasn’t going to have a seizure. I could see she was fighting the seizure and I asked her if she was waiting to have her seizure because she knew I wouldn't leave her if she had another one. Claire told me yes with her eyes, looking up to the right. I knew in my heart she was fighting this seizure; mom had told me she could do that but I had never seen it before. I asked Claire if she was waiting for me to leave to have her seizure so I could go be with my daughter. Claire stopped moving, looked up at me and smiled and said yes with those big blue eyes. The LVN’s said they would keep me posted and I left. About 1 hour later, I got a call from the LVN that Claire had a really big seizure after I left and mom had to come pick her up. When I saw Claire in the morning, I said, “Claire, did you wait to have your seizure so I could take care of my baby?” She gave me the biggest grin I had ever seen and said yes with her eyes and I started crying and gave her a big hug! From that moment on, I was forever touched by Claire and her beautiful spirit.  We developed a special bond of understanding I don’t think I will ever truly be able to put into words. Nothing can accurately describe our relationship or my feelings for Claire or my feelings for her incredible family. Claire, I want to thank you for your time on this earth as you have made such an impact on so many lives and I am truly honored to have been a part of your journey. 

I met Claire during my first week on the job as a Research Assistant in 2014. She had just started the Phase 2 IGF-1 trial and the whole family was in town for the week-long visit. They were the epitome of California cool and Claire was so bright and alive despite all that Rett had given her. From that moment, the English family has had a special place in my heart (and Colleen in my cell phone!!). To say Claire impacted the researcher/clinician I am today would be an understatement. Thank you for everything you taught me sweet and spunky Claire <3.

Colleen, Jared, & Chloe- your Boston family is here for you always <3 I can't wait to see how you carry on Claire's legacy.

I am deeply heartbroken for your family. It was such an incredible honor to be a part of Claire’s life for the time I took care of her, and to get to know her and the rest of the family. Please know I will never forget her and her beautiful smile.
Wrapping you all in love and light.
-Dr Phoebe

To Our Dear Friends Colleen, Jared, Chloe, Kevin and Nancy,
  Our hearts ache for your family. The blessing of a child is a love so deep that it consumes you. It is amazing how as a parent you sense and feel the world around you as if you were your child. Your Claire taught you to be more aware of what is good and kind and loving and important. All of your memories of those fun and sweet moments with Claire will forever be with you. What brings you tears now will someday turn into smiles when those same thoughts of her reappear. Our prayers are for all of you to find peace and comfort in your soul. May God Bless you and your family.
We Love You!
Sincerely, Susan and Tim Reckell

Claire was a sweet girl who brought much happiness to everyone who met her.

It was a privilege to have played a role in her medical care.

Walter E. Kaufmann, M.D.

Thank you Claire for being a part of our lives at DMS and being a part of inspiring our lives. We will remember your smiles, your eyes, and impact with our students. You will be missed.

Our deepest regards and condolences to the entire family.

Sincerely,
the Bayaca Family

She was an amazing girl and a wonderful friend. I loved being in ASB with her and spending so many great times together. Claire was full of energy and optimism, making ASB light up! I have looked up to her in more ways than one. She showed me that you can overcome any challenge if you put your mind to it.

I met Claire at Gardner Middle school. She was an angel I will always remember how her smile could light up the room. Claire had countless expressions that spoke mountains. She had a brave bold spirit and one that I will never forget. She was a true angel and a champion like no other.

I met Claire and her family just a few days after she was diagnosed with Rett syndrome
I still remember Jared and Colleen at church, reeling from the new information, and not sure what it meant yet. They introduced me to Claire and I shared that I had just read an article about a little girl with Rett Syndrome. They seemed comforted to meet someone who had even heard of it.
Cut to a few years later, I was in school to become a medical assistant and I asked them if I could do a video report on Claire and her condition for a school project. I sensed they were a little hesitant to make their daughter someone's school project, but they agreed. Claire was a star and totally stole the show. By the end of the presentation, my class was all in love with Claire and there wasn't a dry eye left in the room. I've gone on to have other roles in medicine and throughout the years I've thought of Claire's example many times. I even saved a patients life once because I paused (thinking of Claire) and asked questions about her non-verbal behavior, which solved the emergency. I've run in to former classmates who have carried Claire in their minds as they treated patients with various conditions. She showed us early on to ask questions, to not assume, and to always let someone do as much as they are capable of (and maybe a little bit more).
Claire was a champion for so many and that's how I will always think of her. She packed about as much adventure as possible in to 15 years and we should all be eager to imitate her, no matter how many years we have. Thank you, Claire. I will be more open, more resilient, and more compassionate because of you.

You never can really forget that laugh. It is an honest laugh a laugh that came from the deepest places and thus, much more satisfying. I never understood what grit and determination meant until I met Claire. She was this golden little bundle when I met her and I watched her grow into a feisty young woman who took what was given to her and turned it around. She is a fighter. I will not ever say was because in my heart she is swimming freely with the mermaids.

I will just share the story that is my favorite Claire story from Chrysalis. When Claire got control of the AAC visual scanner, she learned to use it with the fierce determination she does everything with. I was being shown all the great words and ideas she could share and decided to challenge her.

I told her to tell me a joke. She giggled and then looked at the AAC. In a beat, the mechanical voice said "Sandra blob" and she laughed with that clear deep full soul laugh that she had. And then she looked at me and smiled. I knew I was in the club at that point. Claire had welcomed me in and did it with her wit. 

Coleen, you have always amazed me. I know that this isn't a tribute for you, but I can not think of Claire and not think of the strong and amazing woman who passed that grit and determination on to her daughter. Oh that I could have had some of those wonderful baked goods we talked about back in the day over coffee.

Your family is part of mine, and always will be. Claire was, as I said, one of my first students. And you never really forget your firsts.

Dear Colleen, Jared and Chloe,

When Kevin called with the news, we said a prayer for you and Claire. We have fond memories of seeing her beautiful, smiling face when she visited our home on Powers Lake. She will forever be in our prayers.

Gail & Phil

Claire was, and always will be, one of my greatest teachers. And, to be visited on earth by such an angel should tell you a lot about the kind of parents Colleen and Jared are.
With deep love and sympathy,
Tim

Dear Colleen, Jared and Chloe —
Although I didn’t have the privilege of knowing Claire, I so much enjoyed any picture or report shared by your sweet mom and dad throughout the years. Claire was a beautiful girl and I’m sure an immense blessing to you all, and I know your hearts are so broken. I am praying for you today and in the days ahead, that God strengthens you and guides you and fills you with his peace knowing your little girl is walking with Him. Love you. . Sue Grenz

We were saddened to hear about Claire's death. We met Claire only once in Palm Desert when our families visited several years ago at the winter home of my sister, Karla Walters. She was a lovely and exceptional girl. Our feelings go out to you and your family for this loss.

Dear Colleen, Jared and Chloe,

One thought has brought me great comfort through the years-
We are all made of stardust.

To me, that means all life is interconnected, that not only are we part of the Universe, the Universe is part of us. Claire is a shining example of stardust that has been a beacon in this, often, dark world. I cannot imagine that such a light will ever dim and will serve as a guide for all of us, as our own wheels of life turn.

Claire is like a lotus flower, floating down a river filled with golden fish leaping all around her, in joy. I hope that the day will come when I am standing on the bank and for one moment, I can wade into those crystal-clear waters and hold her aloft; knowing, as she has shown, that pureness of heart is possible in a world of suffering, that seemingly fragile flowers can bloom in adversity, and being absolutely present in that and every moment is the richest of rewards.

You gave her that through all your hope, adventures and constant love- absolute presence in every moment. I imagine, then, her spirit will continue to be present within you, every moment, until you all meet again upon the river of eternity.

So much love to you all.