Hello we are the Tousley/Bartlett family!
For the last four years our family has had many different struggles we have faced head on. Thea, a kind, sassy, smart four-year-old has brought so much joy to our family the second she entered in January 2020 as the youngest of three, alongside Harlan 8, and Lily 10.
As a little back story, at just two weeks old her body lay lifeless in my arms as Garret gave her CPR. This was the beginning of a hard long road, one our family never expected. After a 10-week hospital stay and finally her diagnosis we as a family were ready to take on our future.
Congenital Central Hyperventilation Syndrome was her diagnosis, a rare genetic disorder affecting all automatic functions within the autonomic nervous system. This caused her to be ventilator dependent, unable to regulate her body's temperature, her hormones, her bowels, her eyes adjusting to light, regulating her heart rate, blood pressure and these are just a few examples of what we look for daily.
Garret has continued to support our family financially, working for LANL, while I attend nursing school to become a NICU nurse. As a family of 5 this is quite an undertaking, one Garret takes on with immense pride.
We are lucky enough to have added 2 full-time nurses to help with care at home, Mrs. Kristen, and Mrs. Amanda. Two beautiful, amazing, caring nurses who we now consider family.
This brings us to today, although we have struggled through the years Thea has hit an age where she can see her differences when she works closely with other students. Although we let her know these are all part of her superpowers, we see the importance of her meeting others who also have the same genetic disorder and might struggle with similar issues we see.
For the first time in four years, the CCHS Families non-profit are holding a convention in Newport Beach to meet other CCHS families, celebrate accomplishments, and receive in-person support and education with the hopes of empowerment for CCHS patients and families.
Our goal is to raise enough money that'll allow our family, our nursing besties included, to be able to attend the conference. This money will pay for housing, gas, food, and allow us to make memories we would not otherwise be able to do on our own.
June 1, 2024, from 12-2 a fundraiser will be held at Boese Brothers in Los Alamos, NM. We are so grateful they have allowed us not only a space to raise money for this trip but also a space where we invite the community to learn more about CCHS and enjoy time with their family as they do so! This gofund me allows those unable to attend June 1st, but still want to contribute, or those wanting to contribute additionally.
We look forward to meeting new people in our Los Alamos Community and are always happy to answer questions you might have, so please ask!
Thank you,
Chelsea Tousley
(505)709-0978
