Help Wellston get his service dog trained

Hi, my name is Molly Varney . I am a wife and a mama of two amazing little boys. One of my boys is a one-in-a-million little boy. Most people around us know our story but for those who do not, let me share it and why we are raising funds for our son to get his dog trained to become his service dog.

Wellston is one years old. He was born on March 30 2021 . We faced many new challenges when I was pregnant with this sweet little miracle. At 28 weeks, I was diagnosed with IUGR, a diagnosis of the baby not measuring at the correct weight and height that a fetus needs to be for gestation. We had three appointments a week hoping and praying our son made it to 37 weeks, and by the grace of God, we did. Wellston was born weighing 4 pounds and 4 ounces at just 37 weeks. At a few days old, our son had made his way to our birth hospital's NICU where he spent a week and a half in. All seemed well to the outside person, but my mama heart was just telling me different. I just knew something was wrong with my baby . A couple of days after our son was released from the NICU my husband and I noticed our son refusing to eat and having watery stools that were not normal. I had made a couple of phone calls to his doctor at the time and they had reassured me it was going to be okay but still, something told me otherwise. Later that night i noticed my son not eating at all and he had turned gray ... we had made a couple of phone calls and rushed our son to Nationwide Children's Hospital. When we brought our son into the ED he was soon rushed to the trauma bay, where doctors surrounded him. Our son was truly days away from not being with us for much longer. They had said his body had gone into severe acidosis, hypotherma, kidney damage, and failure to thrive. He weighed in at 3 pounds 11 ounces at 14 days old. That day our lives would forever change.

Wellston was admitted into children's hospital for 6 1/2 half months. During that time our son was admitted, no one could understand what was happening to him . He spent two months in the NICU at Children's and soon headed up to an Intestinal Rehab Floor . While being admitted, no one could understand what was happening with our son . He was still not gaining weight and still having water-like stools. We kept getting the answers. We think it's post-viral because no one could explain why he was still severely ill and not gaining weight. But still, something told me something genetically was going on. I would spend endless nights researching what it could be, writing down things, and bringing them to our doctor.

Roughly into the four months that our son was admitted, our doctors had started reaching out to world known GI doctors. Who then recommended them to test his immune system because if his immune system were low, he would likely have a protien losing enteropathy diease. He was severly immunocompromised, which led the doctors to do a genetic panel to see if we could find out what was happening. We got his results for his IGG levels which were at 54 when they needed to be in the mid-100-200. We soon got those results that our son had a ONE in a MILLION disease.

Trichohepatoentric Syndrome. A disease that less than a HUNDRED people WORLDWIDE are diagnosed. A prevalence of one in a MILLION. That means you line up a million people in a line, and Wellston is only ONE out of those MILLION people that carry this disease.

Trichohepatoentric Syndrome is a characterized enteropathy. Presenting mainly with early onset life-threatening diarrhea in infancy. This usually results in failure to thrive and requires total parenteral nutrition (TPN). THES is characterized by facial dysmorphism, prominent forehead, broad nasal root, and non-pigmented hair. Hair abnormalities such as woolly and easily removable. Severe and life-threatening Primary Immunodeficiency.

Primary immunodeficiencies are rare genetic diseases that occur when part of the body’s immune system does not work correctly. A person with a primary immunodeficiency will more easily catch infections and become more seriously ill than a person whose immune system usually works. A person that suffers from THES also has a chance of Liver failure. Intestinal failure is also a part of this disease which is why he has TPN running through his broviac and he also has a Gtube . He gets 14 hours of tpn a day and has feeds running at a slow rate for 18 hours a day .

Two genes cause this disease. One gene being the SKIV2L gene. Wellston’s mutation is the SKIV2L. My husband and I both carry this mutation and passed it down to Wellston. The chance that each of our children would get this disease is a 1:4 chance with each pregnancy. The chance you meet someone with the same disease as you is rare.

Our doctors and our genetic team told us in the very beginning that infancy and childhood are the most complex battles to get through with this disease. They stated that research they had found is that many children pass before age five or in childhood. Now, we know many children are way past that, and I have faith that our team and the willpower of this child and the power of the excellent man above Wellston will prevail. But to be honest, it is a reality we face. Yes, everyone faces things like that healthy, but our reality of it is a little raw, so we wanted to get a service dog for our son .

I had reached out to Liberty Kennels, a fantastic breeder and we had talked a few times, but ultimately my husband and I decided to wait. Fast forward to a few weeks later the breeder had messaged me and GIFTED our son his dog . HOW AMAZING! We honestly didnt think we would get our sweet new little dog named Wallen (after Mama's favorite country singer Morgan Wallen lol) added to our family this soon but we did because of someone so amazing and with a heart of gold .

Since Wellston has been home for almost a year, we have battled about ten hospital admissions due to his disease. We think having Wallen as his service dog would help our son in his life battling this disease because he does face a lot of time in the hospital, and its so important to us that he has something stable in his life. Wellston has a three-year-old brother at home, and the reality is his brother will have to move on in life as he gets admitted through the years, so having Wallen be by our son's side is so important to us.

Wallen's training is a 30-day board and train that includes private lessons. The total is roughly 6100. Wallen will be trained for Wellstons needs, and private lessons will help with things as Wellston gets older and may need different requirements. We were lucky enough with a family friend who will be training Wallen for Wellston. Once Wallen is trained, he will have public access anywhere and be able to be with our son at his doctor appointments and even on the floor during admissions. We wanted to do a fundraiser for our son so his dog would have the proper training he needs. Anything extra will still go towards Wallen and his needs .

We truly appreciate everyone who took the time to read and donate toward our son's fundraiser or even just a thought and prayer for our family. We cannot wait to share the progress of Wallen and Wellston as they go through life together.

with much love,

A mama of a Warrior.