Help Caysen and Camdyn Get Essential Care

Caysen is a 4 year old boy who is the definition of a warrior. He has been dealt a tough hand since birth but has continually persevered with every obstacle put in his place.

At birth, Caysen was faced with respiratory distress requiring a ventilator. After continued respiratory infections, it was soon discovered that Caysen has a rare genetic respiratory condition called Primary Ciliary Dyskinesia (PCD). With this condition, the hairlike structures that help mucus throughout the respiratory tract do not function appropriately or at all. This leads to chronic respiratory infections that turn into bronchiolitis and pneumonia. To this day Caysen experiences frequent respiratory infections leading to myself or my husband needing to miss a lot of work, which is usually unpaid time. In 2024, I exhausted all of my allotted FMLA to care for Caysen which lead to me not qualifying for it this year. This has been an added stress to our family as my need to miss work to care for Caysen has not changed but without FMLA, my job is now not protected.

In addition to his PCD, Caysen also has a Chiari Malformation, Hydrocephalus, and Eosinophilic Esophagitis (EoE). He currently has a VP shunt that drains the excess fluid from his brain into his abdomen. And because of his EoE he became failure to thrive and has a G-Tube. His care needs are great and in total sees approximately 12 different specialists between Tucson and Phoenix. Living just south of Tucson, our trips to see specialists at Phoenix Children’s tend to be an all day affair as the drive is roughly 2.5 hours each way.

After receiving initial care for Neurosurgery and GI in Tucson, we had some unfortunate experiences that led to the need for a second opinion. Caysen has been under the care of Neurosurgery, Neurology, GI and genetics at Phoenix Children’s Hospital since August of 2021. The care he has received has been outstanding and everything we could hope for as parents to a child with complex medical needs.

We recently discovered that Caysen was falling completely off his growth curve with his overall weight percentile dropping to less than 1%. We knew it was time to do more to help his EoE in hopes of making it easier for him to eat. The decision was made to start him on a bi-weekly injection of a biologic called Dupixent which is aimed to decrease inflammation within the body. It is currently the only FDA approved treatment for EoE but unfortunately is quite costly and is difficult to get approval with insurance. Without insurance, this medication can cost approximately $5000/month. We have yet to receive approval.

In addition to all of Caysen’s needs, hospital stays/visits, multiple specialty appointments, and many procedures, we started noticing some GI related symptoms in Caysen’s older brother, Camdyn. After lab work and an endoscopy with biopsies, it was discovered that Camdyn has Celiac disease. This not only required us to completely change Camdyn’s diet to strictly gluten-free (which he’s done amazing with) it also requires us purchasing all new plates, bowls, silverware, and kitchen related appliances to prevent cross-contamination. For those who may not be aware, ANY exposure to gluten can be damaging to Camdyn’s intestines, even just the tiniest crumb. Changing our grocery buying from regular, everyday foods to adding much more gluten free options, our monthly bill has nearly doubled. Because of our previous experience with pediatric GI care in Tucson, we decided to also take Camdyn to Phoenix Children’s.

Caysen’s care needs require yearly MRI’s of the brain/spine and Endoscopy’s while Camdyn needs Endoscopy’s every other year (sooner if needed).

Both of our boys are established patients with PCH and their care has been covered by my insurance up until January of this year. After my place of employment’s insurance opted to not renew their contract with Phoenix Children’s, their care there is now considered out of network and the bills are piling up quickly. After just receiving our most recent bill of $7100, we quickly realized how fast their care will add up. While it is never easy to ask others for help, it was suggested to us by multiple people to create a donation page for our boys. If you feel drawn to donate towards these costs to get the boys the care they need, every little bit makes a world of difference. If you’re not able to donate but still want to help, sharing this page is more than appreciated. All funds donated will go directly in paying the medical bill expenses and to cover any lost wages to care for Caysen. Thank you for taking the time to read our story and any help you’re able to give.