The Family We Never Knew We Needed – The Chromosome 18 Registry

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.”

Lillian is Ready – Gonna Figure This Out

November 16 2023

There’s no stopping her now! Abdominal ultrasound slayed. Labs from two weeks ago are fine. GI next week, with more labs, and another (different) ultrasound to follow. We are gonna figure out what’s going on so Lillian can fully enjoy this life! I’m just so thrilled Lillian is ready to do this! ❤️🎉❤️

Throwback Post: The Gift of Communication


December 2 2010:

WooHoo Y’all! The RN&R article about Turning Views Foundation and Different iz Good came out today! Kat did a great job of condensing the ton of information I spilled out to her!

By Kat Kerlin
[email protected]
This article was published on .

Lillian Darnell holds the iPhone that, though speech impaired, allows her to talk through a special app. Her mom, Camilla Downs, stands beside her.


Lillian Darnell was 3 years old in 2004 when her mother, Camilla Downs, received a phone call from her pediatrician.

“It was a phone call that landed me in a place I never thought I’d be,” says Downs.

Lillian had been born a month early, so Downs attributed the developmental delays she’d noticed to the fact that she was a preemie. But that day, she discovered Lillian had a chromosomal abnormality, so rare it didn’t really have a name: It’s just called 18p-, a deletion of the short arm of chromosome 18.

“The main way it manifests for her is communication,” says Downs. “Everything is in her mind, she just can’t articulate it.” Lillian is about 90 percent unintelligible.

Before this year, Lillian, now 9, had been carrying around a heavy, clunky “augmented communicator” called Dynavox. She actually had to pull it on a cart behind her at recess. Then Downs heard about Proloquo2Go, an iPhone app that could do the same thing, but on a smaller and, let’s face it, cooler device. She bought Lillian an iPhone and had the app installed. Lillian carries it in her purse, which has a speaker clipped to it to make her “voice” louder. There are programmable buttons on it for typical things she might say in class or to her friends, as well as a section for things she could say in emergencies. For other things she wants to say, she can type it into the keypad and press “speak.”

The whole thing cost less than $1,000. Compare that to the $5,000-$10,000 people pay for augmented communicators. However, health insurance and Medicaid will pay for those clunky, expensive devices, but not for iPhones, iPads or iPod Touches that could have apps like Proloquo2Go installed on them.

“There’s no reason these kids should have to wait to have a modern way to communicate,” says Downs.

The school district will provide an iPod Touch or an iPad to the speech impaired, but not an iPhone, which Downs wanted Lillian to have for emergencies. So she decided to start a nonprofit, Turning Views, which encompasses the Different Iz Good movement to help kids like Lillian. Key to that is “Lillian’s Voice,” the recycling program that takes used iPodTouches, iPhones and iPads and gives them to children who are speech impaired or nonverbal. She accepts “last generation” devices, meaning more recent models, as some older ones may not be able to have the app installed on it. Look for “Lillian’s Voice” drop-off boxes at New2U Computers and Mac-O-Rama. (See column note for details.) People can also donate money or gift cards from iTunes or Apple on the nonprofit’s website,

“People still haven’t caught on that these are more than just phone and music devices,” says Downs. “It’s not just the app itself, but the shift that has occurred in society. It’s a communication revolution, in a way, that includes the nonverbal and speech impaired in a way they never have been before.”

What does Lillian have to say about it? She punches some keys on her phone, looks up, nods her head and presses “speak”: “I like the iPhone.”

The 2023 Chromosome 18 Conference Begins – The End

July 13 2023

Starfish Dinner & Dance. We love us some dancing!

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:

The 2023 Chromosome 18 Conference Begins – Part 5

July 12 2023

Look at this amazing book and card package in the silent auction! Thank you to the authors who contributed to help support the Chromosome 18 Registry & Research Society.

C18 Sibling Panel: All of these sibs are amazing. However, I am deeply biased towards the one on the far right. Thomas, you bless my heart beyond comprehension. You did an amazing job, articulating your points beautifully, and that’s probably the first time in history that the word innocuous was used on the sibling panel.

Thank you to everyone who came to me afterwards with such lovely words to share about Thomas, and my parenting skills. ❤️❤️❤️ Everyone very much appreciates your authenticity and transparency, Thomas. Kendall Powell is an amazing person, and absolutely shines as the sibling coordinator. Thank you for loving us, Kendall!

Getting everyone ready for group photos. 18p- over here!!! The hardest part of the conference!

And photos with the amazing Millers. Love you Matt and Julie. You two did a wonderful job hosting this year. I love me some Miller time!! ❤️❤️❤️

Self-advocates and siblings. ❤️❤️❤️

Beautiful ladies getting ready for the Starfish Dinner & Dance!

The 2023 Chromosome 18 Conference Begins – Part 4

July 11, 2023

Beautiful spot for coffee this morning. I feel like a bit of relaxing this morning.

July 11 2023

Ladies night was so much fun!!! Talking, laughing, and drinking with such beautiful people. I sat back at one point just scanning the room, looking at everyone deep in conversation, laughing, smiling, hugging; and I thought to myself, “This is incredibly beautiful.” ❤️❤️❤️

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. ❤️❤️❤️

The 2023 Chromosome 18 Conference Begins – Part 1

July 8 2023

Team TLC is on board, on our way to the C18 conference in Columbus, Ohio. ❤️❤️❤️ Thomas is in front of us. By the way, Reno-Tahoe Airport is a cluster fuck right now. 😱😡😱

Beautiful Reno sunrise as we left this morning. 💛💛💛

News: The Rawness of Being a Caregiver

November 17 2022

The Nevada Caregivers Coalition hosted a webinar last month on Independent Living Options which I missed due to an appointment for Lillian. I listened to it today, and had myself some long overdue sobbing.

Don’t get me wrong. It was an informative and great session. I encourage anyone who is interested to have a listen.

This caregiving role can feel so overwhelming at times. Especially when you are the sole person in charge of deciding what to do, how to proceed, and then doing it. I’m emotionally and mentally exhausted at this point. I’m still recovering from the Great Burnout of 2019 and 2020. 🤪🙃🤪

I’m not sharing for sympathy. I’m sharing for those who may need to hear this message (myself included). It’s okay to not be strong, to have sad days, to sob ’til there are no tears left, to let yourself feel the absolute utter shit show that life can be. Feel that shit, let it out, let it move through your body. I’m with you. 😍🥰😍

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

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 21 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 17 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.


Latest News: New Role as 18p- Volunteer Coordinator

I have news to share! I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society. Here’s the biography I put together for the C18 website (which can be found here –

(Team TLC – September 2020)

I’m looking forward to my role as 18p- coordinator. My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m 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 to begin work on her phobias. All of these issues are still with her.

I divorced in 2007, moving to Reno, Nevada from Tacoma, Washington. (Hey single parents out there. I see YOU!!) We’ve attended the yearly Chromosome 18 Conference since 2009, when it was in Las Vegas. It was so close, within driving distance, I just had to go check it out (Vegas is an 8 hour drive south of Reno). I was hooked, and we haven’t missed a conference since then.

The Registry has been deeply meaningful to us, by way of education, resources, research, and friendships with others who help us to know we are not alone. Thomas participates in the sibling track, and sibling events in between conferences. He also attends our local Sibshops events, and is in training to become a Sibshop Leader. Lillian’s closest and dearest friends are her 18p- friends, met at conference. They stay connected throughout the year via social media, texting and video chats.

(Thomas July 2021)

In honesty, Thomas and Lillian have a strained relationship. Thomas discusses this with his therapist, among other topics, and Lillian has been discussing it with her therapist. I am hopeful that with time and understanding they can move through this current phase.

I was a paralegal for ten years before Lillian was born, ending my career as a paralegal in the Civil Division of the Pierce County Prosecutor’s Office in Tacoma, Washington in 2001. After that, my husband and I co-owned a construction company.

After divorcing in 2007, and moving to Reno, I taught myself everything to know about  blogs, blogging, and social media. I became a Social Media consultant to local businesses, teaching a couple of times at UNR’s Extended Studies. After tiring of doing this, I became certified as a Coach to assist special needs families, and published my first book, D iz for Different – One Woman’s Journey to Acceptance. In addition, I became certified as a Reiki Master.

I then moved on to substitute teaching at my kids Montessori school for 3 years. When they both moved to homeschooling, I shifted to becoming my community’s go to pet sitter, and dog walker. We moved from that community in late 2019, and in February 2020 I officially became a Shared Living Provider/Host Home Provider for Lillian (meaning that I get paid). I also manage and facilitate a venue that interviews authors around the globe,

(All Team TLC Books to date)

Lillian’s book, Where Would You Fly and Other Magical Stories, was published in 2018. Thomas’s book, Biggest Little Photographer, was published in 2016. And, my latest book, Words of Alchemy, was published in 2019. Lillian also has an etsy shop with her artwork for sale –

(Lillian when she received her proof book 2018)

Lillian graduated in June 2018. Thomas is in between what is traditionally the 10th and 11th grade. These days I spend a great deal of time advocating for the two of them, putting great amounts of time into researching and educating myself. Thomas has just recently been diagnosed with depression, anxiety, and autism. Lillian is due to be tested for autism in January 2022, which I am pursuing so that she can have access to certain therapies.

(Lillian high school graduation May 2019)

Please reach out to me any time. I’m ready to do what I can.

(Team TLC playing cornhole October 2021)

Email address is CamillaDowns @


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

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.