Theodora Elise

Home
United States
Chandler, AZ
Theodora Elise

On October 7, 2013 Theodora Elise was born with an ultra-rare genetic condition; Long QT8 type 1 This allows too much calcium to enter the affected cells.

On October 7, 2013 Theodora Elise Mills was born with an ultra-rare genetic condition; Long QT8 type 1, also known as Timothy Syndrome. She is one of approximately 30 children in the world with this disorder. At the time of her birth, she was given a life expectancy of 2.5 years. However, so much more time can be granted to her, with the proper medical team and treatments on her side. Timothy Syndrome is a disease in which the calcium ion channels, which regulate calcium intake at the cellular level, do not close properly. While many systems in the body are affected by the excess calcium; the pancreas, heart, brain and dental development are the most widely affected. Theodora was born with structural and electrical abnormalities in her heart, which will require surgery, as well as syndactyly (webbing and fusing of her fingers and toes). She is scheduled for her first surgery in April. Following her surgery, she will be seen at the Mayo Clinic in Rochester, MN. In addition to the trip to the Mayo Clinic, Theodora has several specialists she must see locally. The care, prescription therapy and medical equipment she needs will be life long, and often not covered by insurance, due to the rareness of her syndrome. All money raised will help Theodora’s family meet the challenges of getting her to the Mayo Clinic as well as cover her medical needs through the 3-5 surgeries she will have prior to her first birthday.

05/21/2025

What's with all the scam messages about this page getting deleted?

10/07/2024

Today would have been Theodora’s 11th birthday.
I’ve been doing a lot of reflecting the past 7 mos since her passing, trying to figure out where to go from here.
We haven’t been posting much as we try to pick up the pieces.
But, today, in honor of her birthday, we are happy to announce the creation of a scholarship for rare disease patients and their siblings interested in perusing a degree in medicine.
Theodora wanted to grow up and become a doctor. She would have made an excellent one. We can think of no better way to honor her memory and preserve her legacy.
Happy Birthday in heaven, my love.
We all miss you so much every day.

05/02/2024

Theodora loved school. And was so very loved by her teachers and classmates.
We were still so shell shocked by her departure from this earth, and by how many people were in attendance the day they dedicated this memorial stone in the school garden that we didn’t record the memorial and dedication.
I had a chance this evening to see it laid in place.

04/26/2024

When I co-founded the Timothy Syndrome Alliance almost a decade ago with another mom and the researcher who discovered the mutation, I had hoped to read this headline one day.
Unfortunately we knew we always ran the risk that the news would come too late for Theodora and so many other kids born with Timothy Syndrome.
Still it’s a day to celebrate even the smallest of progress.

(On a side note, this is lab that we made the decision to donate Theodora’s tissue samples to after her passing.)

-Courtney

Researchers have been able to reverse the effects of a syndrome that affects brain development in a brain organoid.

04/22/2024

Something that isn’t talked about enough in regards to Timothy Syndrome is the extreme constipation. This is caused in part by the medication taken for the heart. But the larger cause is the way Timothy Syndrome causes smooth muscle, like those of the intestines to malfunction. There is little that can be done.
Infections in TS kids can be fatal. And there is always a risk if a colostomy bag is the chosen route. And we had considered it and spoke to her doctors about it.
Theodora was still in diapers at age 10. She was in constant pain that progressed as she got older. She was taking 1200mg of Ducolax twice a day and it barely made a dent.
It was the hardest thing she had to go through before her cardiac arrest. And there is little to no research on how to combat this

04/05/2024

03/27/2024

When Theodora was a year old she was accepted into a wonderful organization Beyond the Diagnosis.
The amazingly talented Jennifer Gillooly Cahoon: Visual Artist painted this portrait of her.
The goal of the exhibit is to combine art and science to raise awareness, and spur research into rare diseases, using portraits to portray those living with the 7000 rare diseases, and thier goal is to one day have each one represented.
Receiving this portrait is bittersweet. It means Theodora is no longer with us. But, to have a reproduction of her portrait means so much to our entire family.
We have asked that the original remain in the exhibit, as our goal throughout Theodora’s life was always to provide help, knowledge and support for those in the rare disease community. To have her portrait retired in the aftermath of her death feels like a betrayal of all we hoped our journey would stand for. The good it does in the medical community and world to see representation of an ultra rare disease can not be measured

-Courtney

03/21/2024

Theodora loved an adventure.
She loved the mountains.
This heart is one of the last things she touched as she passed away. I will bring it on every adventure for the rest of my days, knowing that some of her energy still remains with it.
She would have loved this hike.

03/06/2024

Written by Theodora’s Mom in the days following her passing

02/28/2024

First of all, I want to thank each and every one of you that has supported our GoFundMe page for our sweet Theodora Elise and her medical bills.

I would like to ask for everyone's continued support through the sharing of the GoFundMe website link that I'm providing below.

02/19/2024

https://gofund.me/63fc4c97

Latest Update:The family has made the difficult decision to sign a DNR, remove Theodora’s life support… Brant Aringdale needs your support for Theodora Mills

Address

Chandler, AZ

Telephone

+12628129020

Website

https://gofund.me/94751629

Alerts

Be the first to know and let us send you an email when Theodora Elise posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Want your practice to be the top-listed Clinic in Chandler?