Help the Larsons Navigate Charley's Medical Needs

Hi! My name is Lindsey Rick, and I am lucky enough to be Amber, CJ, Liam, and Charley's cousin. I'm making this on their behalf because they would never be the type to ask for it themselves.

The Larsons have had a tough go of it lately with sweet Charley. She has been in and out of the hospital with RSV and other infections that have kept her in the hospital and CJ and Amber off work. They have been searching for answers as to why Charley has struggled to gain weight and why each infection impacts her so much more intensely than most kids. This week, they got their answer.

This was Amber's update from CaringBridge: "The results showed that CJ and I both have a mutated gene which was passed down to Charley. This combination means that Charley has been diagnosed with Dyskeratosis Congenita, a rare genetic disorder that causes premature aging of cells and tissues. A geneticist today described it as when the plastic cap at the end of a shoelace falls off, the shoelace is able to fray or be less stable. Essentially, the more that her cells divide, the less stable these telomeres become, hence why it has progressed over time rather than being present symptomatically at birth."

This disorder explains nearly every single abnormal thing that we have been dealing with the last few months. When you look it up, DC (Dyskeratosis Congenita) is tied to a lot of scary things. In Charley’s case, it explains her esophageal narrowing, bone marrow failure, low immunity, and slow growth. Having DC puts her at a greater risk for certain cancers and organ failures. This disorder also gives uncertainties surrounding the longevity and quality of her life. It will need lifelong maintenance and monitoring as there is no cure for the disorder, only management of the diseases that present themselves as a result."

This fundraiser is to help provide a financial rebound for the Larsons as they have had to miss lots of time at work and will likely need to miss more as they navigate her new medical needs.

On behalf of the Larsons, The Millers, and their extended family and friends, thank you for sharing and donating to help this family we love so much! We know they are so loved by so many, and that all of you are rooting for Charley just as much as we are!