December 24 2023
I always love the Chromosome 18 card. Check out the quote on the back of this year’s card. ❤️💚❤️
“The journey from Lillian being diagnosed at 3-years-old to where we are now at 22-years-old would have been immeasurably more difficult and lonely if not for The Chromosome 18 Registry & Research Society. The Registry has blessed our entire family with critical information, research updates, hope, fun, friendships, and the family we never knew we needed.”
**THROWBACK POST**
December 2 2014:
Great autumn sky 2014 …. So beautiful!
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December 2 2013:
Thank you Manal Toppozada for having me come speak to your undergrad med class today at UNR again this semester. I so much enjoy giving students a parent’s view of advocacy for children with special needs and give them an opportunity to walk in our shoes, if only for a few minutes. This time they got the added benefit of seeing my eyes sweat when talking about receiving THE phone call … the one delivering the news when Lillian was 3 years old. Oops!! Guess I’m just in an eye sweating mood!!! Looking forward to next semester’s class! They ask such GREAT questions! xoxo
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Trying my hand at dairy free eggnog … Tastes yummy so far!
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I’m a wee bit late but here’s my Phantom Tea picture … Yummy sipping chocolate in the cute teacup I got in England back in 2000. This is The Registry’s annual fundraiser … if anyone would like to make a donation in Lillian’s name visit the website at http:\\www.Chromosome18.org … Thanks tons y’all!
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December 2 2012:
$5 bag sale adventures!!!!
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Vanilla Cinnamon with a dash of almond milk … YUM!! My tea of choice for the annual Chromosome 18 Phantom Tea!! Research performed by The Registry & Research Society benefit all with chromosome abnormalities .. You can help out for as little as $10 and have some tea in the warm comfort of your own home!! Read more about it here … https://secure3.convio.net/chr18/site/Donation2…
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Just received word that we’ve successfully infected another person with The Team TLC Happy Virus!! WooooHooooo!! Thank you tons to those of you who reach out via FB message or email to let me know we are making a difference in your life!! Big warm and happy HUGS y’all!
May 15 2023
Headed in for a 90 minute massage. I cannot wait! I will melt out to the car in an hour and a half. 🫠🫠🫠
May 16 2023
Forgot to post this from last week. Chromosome 18 new member call. 🎉❤️🎉
May 18 2023
My outdoor roller skates just arrived. 🎉🎉 They’re not tied properly, as I just wanted to try them on. It will be a while before I move from inside the house to outside. 😂🤣😂 But, YAY!! Just waiting on my rainbow socks now. 💋🎶💜🎶💋
**THROWBACK POST**
A more in depth post can be found here …
Journey to Magical Moments – The 19th Annual Chromosome 18 Conference
July 28 2012:
We braved a long walk down The Riverwalk to get some food…
Halfway there y’all!! Having some lunch while we’re waiting.
We made it!!!! Wahoo!!! Awesome view from our room. Time for some food!!!
Look close … Team Member T is with us!!
WOW!!!! This salsa is hot!!! Yum!!!!
Team TLC takes movie night with us wherever we go … Charlotte’s Web in San Antonio!!! We miss you Mr. T …
October 30 2021
Some news to share. I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society.
Hi. I’m Camilla Downs and I’m looking forward to my role as the new 18p- Coordinator. My name is Camilla Downs (pronounced like Pamela but with a “C”), and I’m a mom to 20-year-old Lillian Darnell and 16-year-old Thomas Darnell.
Lillian has 18p-, being diagnosed when she was 3 years old after the pediatrician suggested genetic testing, due to Lillian being behind in more than three areas of development. The pediatrician called me as soon as she got the results, letting me know over the phone, rather than postponing until we could get in to see her. After pulling myself together, I found the Chromosome 18 Registry that night while searching online. This was before Facebook, and social media groups and I joined The Registry shortly thereafter. I spent time observing the conversations in the Yahoo listserv before jumping in, introducing myself, and asking questions.
The main ways 18p- has manifested throughout the years for Lillian are speech difficulties, chronic stomach pain, proprioceptive issues, balance and depth perception, difficulties with executive functioning skills, and inability to process emotions. In hindsight, I can see she exhibits many symptoms of autism. That is currently being addressed. In the past, she has done speech, physical, and occupational therapy. Currently, she receives craniosacral therapy and just began seeing a therapist begin work on her phobias. All of these issues are still with her.
I divorced in 2007, moving to Reno, Nevada from … Follow the link to read the full announcement …
October 31 2020
Thank you Michelle Dvorak for hosting the The Chromosome 18 Registry & Research Society Halloween dance party!! What fun!! Everyone looked amazing and fun in their costumes!! 🎃👻🎃👻🎃👻🎃
October 31 2020
First time over to The Romano Duo’s since December. A whole pot of vegan chili just for me … with a virgin Bloody Mary!! 🧡🖤🎃👻
We had a fun time getting to visit The Romano Duo at their place. All three of us haven’t been since Last December.
We ate dinner outside and then I took Thomas and Lillian around the neighborhood for trick or treating. It was great to see how creative people were with safely handing out candy. Thomas was a secret service agent (who forgot to tuck in his shirt until after photos … Oops!). Lillian was once again The Rose Fairy Princess. 👻🎃💀
Thomas and Lillian also got a surprise visit from their dad who they’ve not seen since 2014. He phoned as we were driving to The Romano Duo’s place and said he’d be driving through town in about an hour. He visited for about 20 minutes before continuing on. 🤷🏼♀️
Home now. Time for Thomas and I to watch Arsenic & Old Lace. ☠️☠️☠️
February 4 2018:
I received my copy of Lillian’s beautiful book and have enjoyed browsing through the many delightful stories. I love the immensely witty dialogue and the truly magical storylines, and I swear there is a bright light shining through each and every word. One of my favorites is “A Mindful Mermaid Story.” I think I’ll have to try doing some MM sometime. : ) And, I definitely also love my notebook!
February 4 2018:
61 books ordered and received on January 24th. 3 remaining. WOW! and YAY! Oceans of gratitude! xoxo
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February 5 2018:
As part of Chromosome 18 Registry & Research Society Facebook Live Series, Lillian Darnell, will be interviewed on Sunday, February 18th, at 6:00 pm CST.
She will talk about her hobbies, what it’s like being a part of the C18 family, her biggest dream, what it’s like living with 18p-, and her debut book. Does anyone have a question(s) they would like answered? xoxoxo (Be sure to “like” the C18 facebook page linked above if you’re interested in attending.)
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February 5 2018:
Camilla Downs, guess what came in the mail today?!? Serena is very happy and impressed since I explained how old your kids are and that they are the AUTHORS! She wants to go visit you now 😃! Great job Lillian and Thomas!! 💗☮
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February 5 2018:
Yay!!! Lillian Darnell look what arrived in our Mailbox today xx thanks to your Mum Camilla Downs for posting this to Us. Ella’s favourite chapter so far is The Flying Unicorns create a Rainbow 🌈 as Ella loves Rainbows and unicorns.
For my FB friends that don’t know, Lillian and Ella share something very special. They are Unique human beings who only come around once in every 56,000 births. They are missing the short arm of their 18th Chromosome. We have become friends with Lillian, her Mum Camilla and Brother Thomas. Even though they live in Reno USA we keep in touch most days 💖
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February 6 2018:
February 27th at 4:30 pm PST on KOLO 8 with Sarah Johns for Lillian Darnell to talk about her book!! … xoxo
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February 6 2018:
Camilla look what I found in the mail box : )
So excited and look forward to reading it – so thrilled Lillian xx – Ailsa J., Australia
February 7 2018:
My friend Lillian Darnell just wrote a book and it is awesome. I just finished the book. -Rebecca P.
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February 8 2018:
The wait is over! Lillian Darnell’s debut book, “Where Would You Fly” & Other Magical Stories has arrived! Lillian is 16 years of age & is a published author! Her Mom, Camilla Downs & her brother, Thomas Darnell are also published authors. That makes 3 for Team TLC! Lillian will be featured on KOLO 8 with Sara Johns, Tuesday February 27, 2018 at 4:30 PST. She is an Amazing young lady & wise beyond her years! – Carolyn S, Reno
Thank you so much Carolyn … for all that you BE. Not just this .. for the 6 or 7 years we have known one another and supported one another and become true friends. Oceans of gratitude … I LOVE YOU!!! xoxo
Can you hear me singing,
“WE ARE Family!” I Love Team TLC! Y’all are Shining brightly right where you are! Keep going! Push through! There’s a pot of gold on the other side of that rainbow.
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February 10, 2018:
Thumbs up from Alanna !!!
