I can only imagine the burdens that this family has endured over the past 11 months. First, Zora had an 105 day NICU stay due to being born at 26 weeks because of fetal distress during a trauma surgery Ashley was undergoing. Zora continues to have many follow up appointments and while navigating Zora’s care, Arya’s symptoms relating to her Alport syndrome with Diffuse Leiomyomatosis continue to increase.

Arya is currently at UofM Mott Children’s hospital to have a g-tube placed due to increasing respiratory distress symptoms and pain she experiences while eating and because the growing tumors and

dilated esophagus will continue to put pressure on her airway.

Arya will be undergoing a esophagectomy (removing her esophagus) and then a Roux-en-Y jejunal interposition( replacing it with her small intestines and bypassing her stomach) . Between the two surgeries she will have 20 hours or more of OR time split between multiple days followed by a minimum of a 2 week hospital stay. Due to the complexity of the reconstruction surgery the team needs time to plan and it will not be performed until sometime in late fall.

This family lives 7 hours from both Children Hospitals where their daughters receive care. They have been traveling to both hospitals multiple times a month to attend many specialty appointments and procedures.

During this time, they have not reached out and asked for anything other than prayers. We continue to ask for prayers. If you have anything more you can give, this family would be grateful as they plan for yet another hospital stay and lots of unknowns.

It is their hope that Zora can be close to the hospital while Arya is admitted and in order for that to happen I (Arya’s & Zora’s Grandma) am planning on staying in Ann Arbor to help care for Zora and be an advocate for Arya during her stay.

They hope to get into the Ronald McDonald House to help offset the cost of lodging however between travel, meals, and time off work expenses are quickly adding up. This family has been living in this stressful state of non-stop doctor appointments, hospital stays, and unknowns for past 11 months now and any funds raised would help lessen the financial burden that they have, are, and will continue to experience.

Thank you for taking the time to listen to a glimpse of their life and if you are able to, thank you for donating. If you are unable to donate please share with your friends and family.

Ashley will be creating a Facebook group for anyone that would like to follow along and receive updates about Arya’s journey if you would like to join to show support and see prayer request. I will add the Facebook group name here when it is created.