The 2023 Chromosome 18 Conference Begins – Part 2

July 9 2023

Just back from my first walk in Columbus. Stunning grounds. And it wasn’t too hot. Bonus!! Not sure these folks have experienced a tattooed woman walk-dancing around the grounds. Now they have!

Photos from today. These people are so precious and amazing.

I absolutely love the photos of the Giggling Trio – Lillian, Macy, and Lauren. They light up around each other, and it is beautiful to experience. ❤️❤️❤️

Latest News: Help Spread the Word for Lillian Darnell’s Fundraiser

Want to help spread the word for my special needs daughter, Lillian? She is fundraising to help pay for our attendance at the annual Chromosome 18 conference this July in Colorado Springs.

Who wouldn’t love a custom poem created just for them? That’s exactly what Lillian is offering for her fundraising efforts. Lillian is a natural poet and loves writing poetry.

For anyone new here, Lillian Darnell is my 17 year old special needs daughter. Her condition is called 18p- as she is missing the short arm of Chromosome #18. We attend a yearly conference every summer specific to her condition. She is adamant every year that she help raise money for us to attend as it’s darn expensive for a family of 3.


(Group Photo from the 2018 Conference in Baltimore)

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours!

Please feel free to share this post with others who appreciate poetry and love supporting artists and fundraisers!

Sample poem above … Oceans of gratitude and LOVE! Visit the link below to learn more about this from Lillian …

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 17 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.

Wonderfully exciting news! My 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Go here to see latest soul writings. xoxo

 

11 Ways to Help Team TLC With Attending the Chromosome 18 Conference

C18 Trip July 2016 #17

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 …. Go here to read the full post ….

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Wonderfully exciting news! My 15 year old daughter, Lillian Darnell’s book, Where Would You Fly and Other Magickal Stories will arrive soon. Be ready to enjoy the magick! Learn more and pre-order here.

Leaf at Sunset and Nature Box by Thomas

Thomas has been at it again creating items to contribute to getting us to the Chromosome 18 conference this July in San Antonio.

(Thomas’ older sister, Lillian, has 18p-. We plan on driving from Reno as this seems to be the least expensive option. If need be, we will take a tent and camp at campgrounds on the way down. Should take about three or four days. Thanks a million for taking a look at Thomas’ creations!)

I’m selling a painting of a leaf I made with a sunset in the background. (Added by my mom: It is made using recycled materials, acrylic paint, sealant, and made ready to hang.) Here’s a picture of it:

Thomas' Painting may 2016

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

I’m also selling a nature adventures set. Here’s a picture of it, along with ideas of what to do with it. (Mom added this: The possibilities of how to use this set is only limited by your imagination. You can also add your own pieces to it. Hand painted and decorated storage container made using recycled materials.)

nature set adventures idea 2

The above picture is of insects enjoying a campfire.

nature set ideas one

The above picture is of a game of bowling.

nature set ideas three

The above picture is of a soccer game.

nature set ideas four

The above is a photo of what’s included in the set.

photo 5 (78)

The above picture is the hand painted storage container made by recycling materials.

(Added by Mom: Please note this set is not intended for infants or toddlers or those who will place the items in their mouth.)

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

And last but not least, I’m selling prints of the mini-figure 365 Photo A Day series.

(Added by my mom: You will receive an 8 X 10 print on high quality paper. The photo series is currently being made into a book! These are being sold as part of pre-ordering the book. Tentatively titled Grand Adventures of the Biggest Little Photographer. Visit this link to learn more.)

If you have any questions, please comment here or email my mom at CamillaDowns @ gmail . com …

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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Latest News: 20th Annual Chromosome 18 Registry Family Conference – Part 3

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This gallery contains 12 photos.

(Thank you Steve Marshall for the picture of our sign!) 20th Annual Chromosome 18 Registry Family Conference News & Recognition Positive Exposure Research Updates Syndrome Breakout Groups Self Advocate/Sibling Mixer Moms’ Night Out Special Needs Planning Program Yoga Interactive Session … Continue reading

Latest News: Trains, Planes and Automobiles: 2013 Chromosome 18 Conference – Part 2


(Team TLC at 30,000 feet up somewhere between Reno and Las Vegas)

Well, almost! Buses, Planes and Automobiles!

That’s how we got from Reno, Nevada to Savannah, Georgia for the 20th Annual Chromosome 18 Conference. Southwest Airlines does not fly into Savannah and the other airlines were triple the price to fly directly into Savannah. Southwest does fly into Jacksonville, Florida which is much closer but that was $300 more per person! I tried every combination I could think of with planes, trains and automobiles. Amtrak was crazy expensive! Even more than flying. Greyhound bus and a car rental were neck and neck from Atlanta to Savannah until you considered gas for the car. Here’s what we ended up with: SW Air from Reno to Atlanta. Greyhound bus from Atlanta to Savannah. Car (via a chromosome 18 friend) from the Savannah bus station to The Marriott! Then the exact same thing in reverse to get us back home again! Whew!


(Waiting at the Las Vegas airport to board our flight to Atlanta)

The Team TLC travel adventures to the 2013 Chromosome 18 Annual Conference in Savannah, Georgia began on Friday, July 26, 2013 with an 8:00 am flight from Reno to Atlanta with a stop in Las Vegas to change planes. This was pretty relaxed and fun for all of us. Just one small incident. Lillian spilled her whole cup of juice inside her travel bag on the airplane which was interesting to try and clean up with the little airplane napkins! It would have gone off without a hitch except the juice found it’s way inside of another little bag inside the big bag and “ruined” the special index cards Lillian had decorated for her friends, Katie Baker, Rebecca Parker and IM. She was so sad and upset!


(Thomas and Camilla at our motel in Atlanta)


(Team TLC at our motel in Atlanta)

We stayed in Atlanta for the night as the next leg of the adventure was a Greyhound bus ride from the Atlanta airport to Savannah. I figured we’d be too tired to ride the bus to Savannah that same night. We wouldn’t arrive in Savannah until about midnight. This is where the fun turns into a bit more work! Getting through a HUGE airport with bags and one kid who clings to my arm the whole time. Airports freak Lillian out. She has to have a hold of my arm the whole time! We cannot use any stairs, escalators or moving walkways. They are a not happening zone with Lillian. In hindsight, I feel we would have been just fine making the trip that night. I definitely learned a lot with this adventure y’all!


(Thomas and Lillian waiting for the bus at the Atlanta airport)


(Camilla waiting for the bus)

Made it to the motel via a shuttle bus provided by the hotel. We ate some dinner, went to bed and got back up pretty early to take the shuttle back to the airport. Greyhound picked us up about 8:30 am and we were Savannah bound via a 4 hour road trip! There were only single seats available and many people were asleep. So we didn’t get to sit together but were very close. Thomas was in front of me and Lillian was across from me. The really cool thing was that we had electrical outlets at our seats and free Wifi! Very neat!


(Waiting for the bus … It was about 30 minutes late arriving)


(Team TLC on the bus …. Atlanta to Savannah)

We made one 10 minute stop in Macon, Georgia. This is where the adventure took a notch up! One of the people who got on the bus in Macon was a young man in his 20’s or 30’s who was possibly intoxicated or high on something. He sat behind and across from me.  About 45 minutes before arriving to Savannah this young man decided to tell me about his autobiography he has written … handwritten ….. over 500 pages … and he has it with him. He pulls it out of his backpack and reads a little from the introduction as he tells me that we should all ask for help when we need it. He adds this book will make him a million dollars and he’s on his way to get it published. Throughout this he mentions several times that we should ask for help along the way in life. The book is about his struggles. I’m thinking that this is so interesting. Not his book. But that he’s written this book about his struggles and keeps repeating about asking for help. I was also thinking to myself, “Dude! I don’t think you are done with your struggles yet!” So, then he finally asks me for money. I tell him I have no money to give him and we are only on this trip because other people helped us.

He went back to his seat, then goes to the bathroom and lights up a cigarette! Well, didn’t take long for that smell to make it’s way up front. About 10 or 15 minutes later we took the next available exit, in the middle of no where, at a boarded up gas station so this young man could get kicked off the bus! That was an adventure for sure! Don’t get me wrong. I was not bothered by this event or this man. I feel we are all doing the best we can with where we are in our life. Perhaps he will be done with his struggles one day and perhaps not. Either way, his life is unfolding as it should.

Finally made our way to the bus station in Savannah. Our Chromosome 18 friend, Mark Sogard from North Carolina, picked us up. Made it to The Marriott about 2:15 on Saturday, July 27, 2013! YAY and WHEW!

Thomas was such a huge help on this trip. We still had brother/sister arguing happening …. yet, he helped me tremendously. Love that wise old soul in a little person’s body!!


(Team TLC after arriving at The Riverwalk Marriott in Savannah)

Our trip back home was the exact same in the reverse order. Our Chromosome 18 friend, John Baker from Arizona, gave us a ride to the bus station in Savannah. I was a mess getting us and our luggage out to the bus. The ride from Savannah to Atlanta was quiet and uneventful.

Except for an unpleasant experience with TSA at the Atlanta airport, the rest of the trip back home was great. The TSA agent wanted each of the kids to hand their ticket to her instead of me handing all 3 tickets to her. This confused them as we had not had to do this before … especially Lillian. The TSA agent then asked them questions which confused them even more! Some stranger asking them questions about their name and where they are going! Thomas told her we were going to Vegas! Huh? Poor kids! Of course she couldn’t understand Lillian. I told the agent Lillian had a speech impairment and she would not be able to understand her. So she went ahead and asked her even more questions. After that incident Thomas and I were finishing off our water before we made our way to security. This frustrated Lillian even more as she thought they were making us waste our water! Then the TSA agent at the scanner rushed both of them through.

That did it for Lillian. She was holding back the tears. I had to spend 10 minutes after we got our stuff together sitting on the bench just past security calming her down. The whole TSA experience was very upsetting for her.

All was well again by the time we got on the plane and headed for home ….

Something I learned: Don’t sit in the back of the bus!! You will smell scents you never wanted to smell and be prepared to encounter some interesting and colorful humans! AND Some TSA Agents + special needs kids = Frustration and Meltdown

Go here for the first installment and Part 1 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here for the last installment and Part 3 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here if you’d like to see more pictures of our adventure …

 

Latest News: Thank YOU – Team TLC 2013 Chromosome 18 Conference Fundraiser – Part 1

Team TLC returned from the Chromosome 18 Conference on Friday, August 2, 2013. It was a great and heart warming experience for all three of us.

First, and most importantly, I have overflowing gratitude for the people in our lives who took part in the Team TLC fundraiser to get all three of us to the 2013 Chromosome 18 Conference.

Without your support, love and kindness our trip would not have been possible. Some of you purchased custom created stretch bracelets from us and some of you chose to donate money towards the trip. Sending thanks, smiles, and warm hugs on wings of pure love to each and every one of you ….

Robert Downs
Tim Bishop
Frank & Patty Romano
Connie Wilson
Peg Flowe
Katie Sprister
O.C. Gillham
Kathy Borello
Suzanne Bean
Robin Mayfield
Roberta Verdun
Lauren Bradbury
Robin Kehoe
Loretta Bonilla
Cheryl Donlan
Deb Yocum
Nora Schaefer
Cassie Salsberry
Lillie Salsberry
Carolyn Smith
Cathy Diver
Lisa Glazier
Rachel Flower
Melanie Gorrell
Roxane Daigle
Alisha and Steve Peters
Sandra Ozment
Dawn Ward
Tony Hightower
Mackenzie Banta

In complete and open honesty I had chosen not to be attached to attending the conference this year. I would be happy if we attended the conference and I would be happy if we didn’t attend the conference. However, my two absolutely fabulous kids, Thomas and Lillian, had their heart set on it. I talked with them up until nearly a month before the conference about not being too attached to going.

Making the bracelets was Thomas’ idea. Once we began the fundraising and sharing on facebook, the response was so overwhelmingly positive that I saw an opportunity to help Thomas and Lillian experience and be a part of the unfolding and manifestation of what they desired.

It was extremely moving receiving such enthusiastic support from our friends and strangers alike. Especially with the support of some of our Chromosome 18 friends who would not be able to attend, yet chose to support our efforts to get to the conference.

Team TLC at the Reno/Tahoe Airport ready to leave for our 2013 Chromosome 18 Conference Adventure!

We had a great adventure traveling to and from the 20th Annual Chromosome 18 Conference. You can read about our adventure here.

Thank you, Thank you, Thank you …… With oceans of gratitude …. ♥

Go here for the second installment and Part 2 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here for the last installment and Part 3 of Team TLC 2013 Adventures to the 20th Annual Chromosome 18 Registry Family Conference.

Go here if you’d like to see more pictures of our adventure …

 

Journey to Magical Moments – The 19th Annual Chromosome 18 Conference

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Another summer and another Chromosome 18 Conference has come to an end. Another journey of adventures with crazy luggage, stairs, peaceful strolls along the Riverwalk, laughter, tears and …. magical moments. A journey to a place where not everyone knows … Continue reading