2023 Chromosome 18 Conference in Columbus, Ohio – Last One

Posted on August 30, 2023 by Camilla

July 13 2023

So much love,
So much joy,
So much good stuff.

This is Jonah. He is amazing, and I love his outfits, and I love his wonderful family. ❤️❤️❤️

Amy, Julie, and me. Our girls love one another, and I love these ladies!

Tara and Isaac. Thomas and I love you!!

And the happy winner of the book package! Thank you to the authors who contributed your books!

Swimming before leaving for our flight later today.

Thomas went with Christopher and his dad, Bill, to the Air Museum, followed by lunch while we hung out here with Liz, Charlotte, and Kelsey. We ordered pizza and had lunch by the pool.

Bill invited Thomas to come along with he and Christopher to the National Museum of the US Air Force. They had a good time. 💜🌿💜

Extra photos:

Throwback Post: 2014 Chromosome 18 Family Conference

Posted on November 20, 2022 by Camilla

**THROWBACK POST**

July 10 2014:

Farewell dinner and dance …. We are family, get up everybody and sing …. Love, Love, Love my C18 family!! Y’all are the diggity bomb! ♡

Lunch time for Team TLC …. Day after the conference. We miss everyone!

WOW! Amazing library! So cool that this library is only a 15 minute walk from the hotel AND Team TLC got to hang out in it this afternoon!

Throwback Post: The Litmus Test

Posted on August 1, 2022 by Camilla

**THROWBACK POST**

July 30 2015:

“The Litmus Test” …. Brought to us by the wonderful siblings of the Chromosome 18 Registry. The Sibling Panel is one of my favorite sessions at the conference. It’s the ONE session I do NOT miss.

Pretty much all siblings agree about “The Litmus Test” as something they unofficially use with new friendships and with potential significant others.

Two siblings had brought along their significant others and what they had to say made my eyes sweat! What they shared is so beautiful …. What they had learned being at the conference, the joy of being around all of us, and thanked us for having them.

I feel “The Litmus Test” applies all across the board … potential friends of the sibs, potential friends of the parents, potential significant others for sibs and potential significant others for parents. “The Litmus Test” … Sounds like a GREAT book title to me!!

And, Ronda, what your amazing daughter shared had my eyes sweating a river. I, too, feel that part of the purpose is to help us learn that change happens within our own minds and our beautiful children facilitate this for us.

Oceans of love and gratitude to the siblings and their significant others … xoxo (Thank you Andy for facilitating the panel!)

The 2022 Chromosome 18 Family Conference – San Antonio

Posted on July 28, 2022 by Camilla

July 6 2022

Got here yesterday, but I was suffering from motion sickness from the landing. Thomas and I are waiting for some lovely vegan food to be delivered. Southern vegan food. Yes! Gimme some of that! We’ll go for a river walk later. (San Antonio Riverwalk)

July 7 2022

We finally got out for a short walk.

July 7 2022

Last night and this morning. The Giggling Duo have been reunited.

July 7 2022

Lillian and I went for a walk this time.

July 8 2022

I finally got photos of this trio!!

Lillian and Macy, the original Giggling Duo.

Lauren joined the duo a few conferences back, to make it a trio. Love this trio!!

July 10 2022

More of the trio. Their friendship makes my eyes sweat with liquid love. Thanks to Amy for taking some of these.

July 10 2022

Last day of conference, and Starfish Dance.

More photos taken throughout the event …

Photos taken by Rick of Positive Exposure …

(Entire Group)

(Siblings)

(18p-)

Photos by Others …

(Parent Panel)

(Volunteer Coordinators)

(Sibling Panel)

(Sibs Night Out)

Throwback Post: The 2015 Chromosome 18 Conference

Posted on February 8, 2022 by Camilla

July 24 2015:

We’re off!! Team TLC’s first long distance road trip together. Wahoo!!!

We made it about an hour ago!!

Dinner with the lovely Marianna Kuortti, Shelby Stevenson and Lorie Stevenson. Thanks for the dinner company ladies!! xoxo

July 25 2015:

Happy, blessed, and grateful …. LOVE!! … And some improvising on my part since we have no plates! HA!

Handed out a few Thomas Love Cards yesterday!! YAY!! Thomas shared a hug and a kiss, I gave the lady at the hotel check in counter a hug, and a “You are Awesome!” to our server at the restaurant last night. xoxoxo

Swimming!!! xoxo

Went for a walk today … Just love exploring!!

More exploring and then dinner with the wonderful Natalie Banton, Noah Banton, and Jeff Banton. Thank you for the amazing and fun dinner company! Phone went dead before I got pictures of actual people! Thank you Jeff and Noah for having so much fun with Thomas! My meal looks like a big mess, but it was so yummy! Wild mushroom polenta. Oh my gosh! So good!!

July 27 2018:

So wonderful to meet you face to face!!! Thank you oceans for your kind words!!!

Breaking, Fabulous, Wonderful News!! While I was in a session today, Lillian Left the Room All By Herself, Got On the Elevator, Went to the Lobby, Sat in a Chair and Waited for her Friend to Come Meet Her!!! Holy Heck!!! If you are out and about tonight or having a night in, please share a toast, a hallelujah, and celebrate with me!! Wahoooooo!!!!!!!!!! I’m so excited!!! Now! For ladies night! Time to celebrate with some very amazing and wonderful women!

Look who I ran into in the lobby!!!!! Pure happiness! For those that don’t know, this is Rick Guidotti!! He comes to our conferences every year and takes wonderful pictures of our kids and us! You can learn more at Positive Exposure … xoxoxo

July 28 2015:

I am so much enjoying our chats together, Kristina Bjorklund!!! So very happy we got to meet face to face and share hugs!! xoxo

Lillian, Natalie and Madison.

July 30 2015:

We had a surprise visitor at the farewell dance last night. Made my eyes sweat just feeling the excitement and energy that her visit brought. xoxo

Pretty much all siblings agree about “The Litmus Test” as something they unofficially use with new friendships and with potential significant others.

Oceans of love and gratitude to the siblings and their significant others … (Thank you Andy for facilitating the panel!)

Farewell …. Til next year!!!

More farewell smiles … Thomas just loves his little buddy, Isaac!!

Finally made it to check out the library! Whole building is glass = A hugely freaked out Lillian. The kids section was down one level. Gave her a choice to sit at the main level while Thomas and I went down or choose the stairs or glass elevator and go with us. She chose the elevator. Go Lillian!! After I got them settled with books I went to the top! That and coming back down made by head and stomach spin. HA! I’m kinda freaked out by the all glass building too. Part 1

One more swim and one more meal at Red Rock.

August 5 2015:

Spent some time yesterday making thank you messages. So fun!!

August 9 2015:

All of the photos can be seen here:

https://www.facebook.com/camilladowns/media_set?set=a.10153588481731584.1073741881.681171583&amp%3Btype=3

Fundraising for the 2019 Chromosome 18 Conference – Lillian

Posted on April 8, 2019 by Camilla

Sharing for Lillian Darnell (my daughter for those who don’t know) …. She is one determined being with this every year. She will continue to ask me for ideas every other day with a determination and steadfastness that rivals a future Olympian in training …

“Hey, everyone! For this year’s fundraising efforts for my family to attend the Chromosome 18 Conference in Colorado Springs, I decided to make customized poems. Here’s some information on the poems:

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours! You can get a decorative border around the poem, incorporating recycled materials; or simply the poem emailed to you.

Now, here’s some information on what the Chromosome 18 annual conference means to me:

The Chromosome 18 conference means a lot to me because I get to meet new friends and spend time with old friends. It also means a lot to me because I get to travel to a new city with my family.

The Chromosome 18 conference helps me get over my fears and my emotions. It helps me feel brave, courageous, and enjoyable. Here’s an example: In July 2017, when my family and I were inside the airport, I was fearful, nervous, tired, and afraid; yet, the view I got from the airplane was amazing and it was all worth it.

Here’s a poem as an example:

Butterflies dash and play
Within the golden sunbeams
Dancing in the afternoon sky.

Butterflies fly in the sky like a colorful moving rainbow
Glimmering in the sky.
The sky sparkling like water.

Butterflies dance freely along
the water.
Water sways as it’s greeting the butterflies.

©2019 Lillian Darnell

You can still purchase prints of my abstract artwork also.”

from me: Lillian has a condition called 18p- which means she is missing the short arm of chromosome #18. The ways in which this manifest for her are: difficulties with articulation, balance and depth perception issues, chronic pain, difficulties with handling strong emotions, and irrational fears and worries.

Her only friends are through the Chromosome 18 group. She always chooses one fear to conquer leading up to the conference. This year it is her fear of taking a shower (she’s always taken baths). She’s nearly conquered it already! The conference is like one long therapy session for the entire family as there is a track for parents/caregivers, a sibling track, and a self advocate track.

Feel free to share this with any you know who enjoy supporting artists and fundraisers.

(Photo of Lillian on one of our date days; and a message from Lillian, table centerpiece and a group photo … All from the 2018 conference in Baltimore)

Go here to learn more ….

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

Macy in the Sky with Rainbows by Lillian Darnell

Posted on August 29, 2018 by Camilla

July 10 2018:

Somewhere in the vast blue sky between Baltimore and Vegas; Lillian showed me something she had typed in her phone.

After I read it, a lump formed in my throat as sweat pooled in my eyes … Once I was able to speak, I suggested she expand it and create a story. I could tell it meant so very much to her and that this came straight from her heart. May this touch your heart and shine of the love of friendship and the love of nature.

With permission, here’s what she wrote: “Sometimes I hope Macy will travel on an airplane one day in the future so Macy could see how beautiful the sky is in the air. Maybe she could be able to see a circular rainbow or better yet a spectacular sunset, sunrise, or both if that day comes (I hope it does … )”

Here’s the story; which she wrote right then and there during the flight:

Hey, everyone! I wrote this story on July 5th inspired by a daydream I had for a year. The character’s name is based on Macy Miller (a close 18p- friend of mine). I hope you enjoy!

Once long ago, there lived a young girl named Macy Helens who was afraid to fly on an airplane. One day though, her parents who were named Hannah and William announced that they were going on a family vacation but they needed to take an airplane to their destination.

Hannah had made a smart decision to use this vacation to help Macy get over her fears of flying. So Macy was scared but she knew she had to overcome her fears eventually. So Macy agreed to go. They left the next morning.

First, they went through TFA (The Fairy Association which is similar to TSA) and Macy wasn’t even scared but she was proud of herself. Macy handled the searching for a gate number, waiting, and the walking quite easily. The hardest thing was getting on the plane but she told herself not to look down.

It worked perfectly. Once they were about to take off, Macy was afraid of the steep incline that what she did was look out the window for familiar sights. Macy saw circular rainbows, a beautiful sunset, and a gorgeous sunrise as well. She was very impressed. Finally, their flight landed and Macy was very happy and proud.

Chromosome 18 Registry Family Conference 2017 – Naperville, Illinois

Posted on August 5, 2017 by Camilla

July 10 2017:

Picked up a load of Biggest Little Photographer books this morning! He gets to fly to Chicago tomorrow. No luggage for you Biggest Little Photographer. You are your own luggage! xoxoxo

July 11 2017:

We made it! Early morning flight. We got to see the sun rise. Now just waiting for our room. Great flight. Great ride here.

Thank you Stacey Perez for having Lovey over for a vacation at The Perez Casa. And thank you times a million for picking up Rosey from the airport. It was great to be able to drive our own car this morning!

July 11 2017:

Spinach salad with red and green peppers, red onions, mushrooms, and roasted potatoes …. with a honey mustard dressing. Thomas and Lillian had more traditional pub items. Yet, so happy and grateful this was on the menu for me!!

July 12 2017:

They communicate nearly daily. One lives in Reno, Nevada and one lives in Kentucky. I got the countdown all day as to when she would arrive this afternoon in Naperville.

Finally!! They get to be together face to face!! I think Macy Miller and Lillian Darnell are kinda happy.

July 13 2017:

He waits all year to be a crazy kid with his sibling friends. Here they are off to a sibling outing. This makes my eyes pool with sweat. Love ….

Looks kind of messy in this picture, yet it was soooooo amazing!!!! Incredibly yummy bruschetta I had for dinner last night at a local place that donated 15% from the evening to The Chromosome 18 Registry. Thank you Bricks Wood Fired Pizza!! Thomas and Lillian loved their dinner too! xoxo

July 14 2017:

Swimming with friends for Thomas. And I got to meet Kunali! He was laser focused on where his dad went. I adore his ears. So cute! Then there was sitting on the couch and chatting and being silly with friends.

Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)

Wee little walk around the hotel yesterday with Lillian. Beautiful flowers and a cool accidental photo. Plus, a flowers view of the hotel. Yay!! Fresh air and bits of nature. xoxoxo …

****************************

Favorite Chromosome 18 Conference comment so far: “I don’t think I can answer anymore questions Kati.” -Matt Miller (Debra Anne Kovacs) xoxo …. Love Ms. Kati!!

****************************

July 15 2017:

“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh

Lillian and Chris having a great conversation!

Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!

Happy, happy, joy, joy …. xoxo …..

Picture of 18p- group …. xoxoxoxo

Farewell Dinner and Dance

July 16 2017

One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo

July 16 2017:

Wish we’d had more time to explore the Naperville Riverwalk. So incredibly beautiful. Only got one hour there before we had to make our way to the airport. The music from the carillon is indescribably amazing. Would love to have toured it! And that’s one wide tree! If I had known it was so peaceful and soothing, I may have been MIA from the conference. Oh my gosh!!

This one called for its own post …. “What We Need” ….

This spoke to me deeply. Time disappeared, all else faded. It was only these words, nature, and me. Be still. And know. xoxoxo

July 17 2017:

Approaching the Reno Tahoe airport last night in first picture. Somewhere over Utah or Nevada in the other pictures. Nature and love are incredibly beautiful and good for us. xoxo …

July 17 2017:

Just picked up Lovey, the guinea pig, from The Perez Resort (ran by Stacey, Eric, and Mason Perez). They are so good to her and Team TLC.

They clipped her nails and fed her all kinds of yummy fruits and veggies. She graced them with many great guinea pig sounds for all their efforts!

They picked up Rosey, Team TLC’s car, at the airport last Tuesday so I was able to drive us to the airport at 4:00 am Tuesday morning. They filled up Rosey’s tank; which hasn’t been full in quite a while!! They delivered Rosey back to us at the arrival pick up area last night at Reno-Tahoe airport!!

Thank you Stacey, Eric, and Mason! Y’all are the best and we are so incredibly blessed and grateful for your kindness and love!!! xoxoxoxoxo

July 18 2017:

Most “WOW” conference moment … We traveled nearly 2,000 miles from Reno to Naperville and met a mom and daughter (with trisomy 18p) from Grass Valley, California … about an hour and a half from here. It was their 1st conference! Can’t wait to visit them in Grass Valley! Virginia was born in 1961 and was diagnosed in 2012. xoxo

Best follow up comment to a session at the Chromosome 18 conference:

“The people who created the formulas and rules were drunk.”

Comment courtesy of Thomas after he and I had a discussion about John McGing’s SSI/SSDI/Medicaid/Medicare session. It’s enough to drive one to drinking … Cheers! …. xoxo

July 19 2017:

Fifteen Biggest Little Photographer books travelled by backpack to Naperville with us. Only three came back.

Oceans and oceans of gratitude to everyone for their support, and to Thomas and Biggest Little Photographer for being the Way for Team TLC to eat while we were there!

YAY for food! YAY for inspiring creations! xoxo

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Posted on July 8, 2017 by Camilla

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations and items for sale:

Lillian’s debut book, Where Would You Fly and Other Magickal Stories, debuting by October 2017. Pre-order here … https://lilliandarnell.com/author/
Thomas’ book, Biggest Little Photographer, published in October 2016. Order here …. https://BiggestLittlePhotographer.com
Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here …. https://camilladowns.com/books/
~~Skeleton key wind chime designed by Thomas and created by Camilla~~ ($25 – includes shipping) … **SOLD** Picture here … https://www.facebook.com/photo.php?fbid=10155549637116584&set=a.52927246583.79053.681171583&type=3&theater
Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here … https://lilliandarnell.com/lillians-art/
Hand made notebook by Lillian … Order here … https://lilliandarnell.com/lillians-art/
Custom poem for you or a loved one (by Camilla) … email Camilla at Camilla Downs @ gmail . com ….
Queen size solid wood sleigh bed frame … Make an offer … Picture here … https://www.facebook.com/photo.php?fbid=10155404014936584&set=pb.681171583.-2207520000.1499540619.&type=3&theater
If you are a business owner and want to sponsor us, I’m happy to wear promotional items, get a temporary tattoo, write a blog post, etc. …. email Camilla at Camilla Downs @ gmail . com …
Just want to donate …. Go here … https://www.paypal.me/camilladowns
Prayers, blessings, and good juju!!

If you’re wondering why this is such a big deal for Team TLC and why it means so much for us to be there, go here and here.

With tremendous gratitude and blessings,
Thomas, Lillian, and Camilla
xoxoxo

(Team TLC with our friends from Australia!! xoxoxo)

Hand Made Custom Notebooks by Lillian Darnell

Posted on June 3, 2017 by Camilla

May 20 2017:

From Lillian …. (The conference is in Naperville, Illinois this year) …. xoxo

Hey, everyone! Every year around this time, I like to create something to fundraise and help my family attend the annual Chromosome 18 Family conference.

This year I am creating handmade notebooks which can be customized.

Here’s a sample. Let me know if you want one by commenting here or sending an email to my Mom at CamillaDowns @ gmail . com .

She’s already received THREE orders! YAY Lillian!

Team TLC = Thomas, Lillian and Camilla

Tag Archives: chromosome 18 conference

2023 Chromosome 18 Conference in Columbus, Ohio – Last One

Throwback Post: 2014 Chromosome 18 Family Conference

Throwback Post: The Litmus Test

The 2022 Chromosome 18 Family Conference – San Antonio

Throwback Post: The 2015 Chromosome 18 Conference

Fundraising for the 2019 Chromosome 18 Conference – Lillian

Macy in the Sky with Rainbows by Lillian Darnell

Chromosome 18 Registry Family Conference 2017 – Naperville, Illinois

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Hand Made Custom Notebooks by Lillian Darnell