By admin | November 15, 2022

Listen to the Story Sanctuary Podcast: Aleese’s Family

When my husband Rane Stone and I got married in May 2014, we knew we wanted to start a family. I found out early on that I was unable to get pregnant, so we decided to adopt. Fostering had always been on my husband’s heart, and I had thought about it too, so we knew it was the right path for us.

We received our first foster license in September 2015 and completed countless hours of training, classes, inspections, and phone calls to meet all the requirements to foster. We started by welcoming two foster children into our home, but within a few months, we were already up to four. We knew this was our calling, and we were happy with our decision, but nothing could have prepared us for the more than seventy-five kids we would foster over the next five years. Some stayed for a night, some a weekend, and others much longer. Each circumstance was different and we treated them like they were part of our family.

In December 2015, we received a call regarding a little girl from our local children’s hospital. We said yes almost immediately and began training to meet her specific needs. That experience felt like a next step in our journey, and in February 2016 we took in another child from a hospital, this time a little boy, and once again trained to be his caretakers. He arrived tiny, malnourished, and battling many health issues, all of which were new to my husband and me. We spent many hours learning how to navigate the medical community while providing the best support possible for our kids.

Roughly six months later, another call came. We were told about a six day old baby boy with many health needs and we didn’t hesitate to welcome him into our home. But this case was unique, and it marked the beginning of a new journey for our family. We raised the young boy until he was eighteen months old, and in that time we went through trach surgery, trach training, dozens of hospital visits, late night 911 calls, training nurses, and much more. My husband and I never imagined we would be doing all these things, but we were determined to help that little boy.

During this time, I found out I was pregnant with our first child. I miscarried in January of 2018 and found out in July 2018 that I was pregnant again. In January of the following year I had my son, Rhys. I didn’t have any complications throughout the pregnancy, but when Rhys was a few days old we noticed him starting to turn blue while eating. He also wasn’t gaining much weight. Doctors told us to be patient, and that his condition was common for premature babies, but that things would eventually work themselves out. We quickly learned that was not the case.

Rhys received his first feeding tube when he was three months old. By this time, he was already behind on many skills compared to other children his age. We immediately began therapy to aid  his development, but progress was painfully slow. Rhys didn’t sit up until he was eleven months old, and he didn’t crawl until he was fourteen months. He learned to walk at the age of two, but only with the assistance of a special medical chair.

With Rhys’ numerous health issues in mind, my husband and I began searching for other children with similar needs to see what—if anything—doctors were recommending for treatment. We were referred to Cincinnati Children’s Hospital and Clinic after speaking with numerous parents and medical professionals. It was not the end of our journey, nor close to it, but it was yet another step in the right direction.

In September 2020, we finally had an answer. Genetics doctors discovered Rhys’ official diagnosis was a combination of TRNF13B and KMD5B, two incredibly rare diseases without much available information. Some may have been dismayed by these answers, but not us. We finally knew what we were up against and were ready to continue fighting.

Throughout this experience, my husband and I became immersed in a widespread medical community of supportive doctors, nurses, and parents of sick children. We also had help from our friends, family, and the foster community. Rane and I have learned about feeding tubes, seizures, suctioning, rehab clinics, numerous therapies, and so much more from our experience as parents, and we are continuing to learn new ways to help today. 

Now, we feel our mission is to educate, advocate, and help the families of rare diseases like us to find resources to help their child with special medical needs. You are not alone. We are here for you.