Help Torvin - 9 month old with Cerebral Palsy

Hello, I’m Kelby Barnhill, father of Torvin Wilder Barnhill. Torvin’s mom, Dara, and I are starting this Go Fund Me to help raise money to cover the cost of Torvin’s medical treatments. In December 2021, Torvin received a diagnosis of cerebral palsy (CP) from the NICU follow-up team at UVA due to his traumatic birth. We have incurred thousands of dollars in out-of-pocket expenses for treatments that give Torvin every opportunity he needs to live his best life.

Torvin was born on April xx, 2021, via unplanned C-section. As I watched from around the curtain, I saw the surgical team struggling to pull Torvin free from the incision in Dara’s abdomen. His head was firmly lodged in the birth canal. As one of the team pressed their total weight on Dara’s pelvis, the other leaned back and eventually pulled Torvin free.

Only then could we see that the umbilical cord was wrapped twice around Torvin’s neck. His body was some weird shade of blueish-greenish-gray. We waited in vain to hear him cry as our doctor cleared his lungs of meconium. Torvin’s pediatrician applied a respirator mask to our boy’s tiny face.

It appeared that Torvin was breathing but just barely. Without even a chance to see him, let alone hold him, he was whisked from the operating room. We didn’t know it at the time, but it would be more than six days before we had a chance to hold our baby for the first time. It would be over a week before we would hear him cry.

Later that night, Torvin was transferred to the NICU at UVA. He was diagnosed with hypoxic-ischemic encephalopathy (HIE) when oxygen is cut off from the brain. This condition typically presents as a precursor to further central nervous system disorders later in life. The lack of blood and oxygen to various portions of the brain prevents or delays normal development in those regions.

Torvin’s doctor at the NICU told me that I should prepare myself for the genuine possibility that Torvin might die. She warned that Torvin would certainly face severe life-long cognitive and motor disabilities if he did make it because of his brain injury.

The story of our twelve days in the NICU could be a book all by itself so that I will cut to the chase: Torvin did indeed make it, and on April 21, 2021, we took him home for the first time.

It’s been a hard road for Torvin these last nine months. In December 2021, he was diagnosed with cerebral palsy (CP). CP is a group of disorders affecting movement, balance and posture. For Torvin, this means that he can’t sit up on his own at nine months old (though he's trying). He can’t crawl (though he's trying). Only in the last few weeks has he begun to roll with any proficiency. He’s far behind almost all of his developmental milestones.

All the research on CP indicates that building new neural pathways while the brain is still plastic is essential. Muscular and soft tissue manipulation, stretching, physical therapy, etc., are all standard techniques for helping a kid with CP develop to their potential, given the particular limitations resulting from their brain injury.

The Infant & Toddler Connection of Virginia is Virginia's early intervention system for infants and toddlers with disabilities and their families. Early intervention services increase a child's participation in family and community activities. Our team is out of Longwood in Farmville VA.

We’ve been working with Early Intervention, and they’ve been a great addition to Torvin’s team. Torvin has a physical therapist visit him three times a month to help him with movement, posture and balance. He has an occupational therapist once a month to help him with fine motor skills. Recently he was given services with a speech therapist. As Torvin grows and develops, Early Intervention will modify its services to help Torvin achieve realistic goals and milestones.

We are very grateful for the services we receive from Early Intervention, but it is clear that Torvin needs more help than what they can offer us. Their therapists have many other families they work with. We can see that most of the time they are stretched to their limits trying to keep up with the responsibility of their incredible caseload.

Therefore, in addition to the services of Early Intervention, we have been paying out of pocket for a supplementary physical therapist so Torvin can have professional help practicing and learning new skills at least once every week. She is an expert in her field and brings a broad understanding of the particular challenges families like ours face. 

Torvin continues to amaze his care team week after week with his progress. Dara and I are diligent about practicing all the techniques we learn with Torvin, and we can see that it’s helping.

Another key to Torvin’s long-term healing and development is bodywork. We’ve seen a dramatic improvement in Torvin’s range of motion, strength, mobility and flexibility from treatment with various bodyworkers. No doubt, he is more comfortable in his body due to these treatments. Unfortunately, insurance doesn’t cover any of these practices.

Torvin is getting treatment from an excellent Counterstrain therapist. She specializes in soft tissue manipulation, which gently brings the various fascia of the body back into alignment. We pay for this service out of pocket.

Additionally, Torvin receives another type of soft tissue manipulation that promotes the proper alignment of bones and muscles called the Bowen Technique. We pay for this service out of pocket.

We also collaborate with a well-regarded homeopath. She’s been a fantastic resource for exploring his various limitations and ailments in the context of a complex and interconnected system. We pay for our time with the homeopath out of pocket.

Special thanks goes out to the therapists at Virginia Center for Neurofeedback in Charlottesville VA. These practitioners are treating Torvin with cutting edge and state of the art therapies like: LENS , VIELIGHT and Bemer to name a few. These amazing therapies we also pay for out of pocket.

Of course, we continue to see our pediatrician, our NICU follow-up team, and other various medical practitioners that any normal baby would need. Each time they see Torvin, they are pleased and excited with his progress.

Our care team has informed us that Torvin will need various mobility devices due to his delayed mobility, starting with a powered wheelchair. We are optimistic that he will walk (and run and climb and do all the other fun things most kids do); the research shows that getting kids autonomous as soon as possible gives them a healthy sense of identity. Many of these devices cost several thousands of dollars.

Dara and I are both self-employed. Dara runs a dog training and animal services business. I do carpentry, renovations and odd jobs. Because Torvin needs so much help at home, both of us can't work full time. Mostly Dara does the dailys with Torvin, and I work as much as I can to keep up with the bills. Sometimes we trade-off, and I stay home with Torvin.

Before Torvin’s birth, we were all set to buy a parcel of land on which we would build our dream home. Dara would be able to expand and run her business from home, increasing the number of animals we could take on at a time. Unfortunately, with the combination of reduced income and additional expenses, we are seeing our savings dwindle month after month.

It’s clear to us that we need to ask for help. So far, we have been able to get by, but it won’t be long before spending everything we have saved on therapies for Torvin’s healing and development. Our dream of owning our land and home is slipping through our fingers.

If you know Dara or me, you will know how hard it is for either one of us to ask for help; especially with money. We’ve done everything we could to be autonomous and self-sufficient in our lives and chosen professions over the last seven years that we have been together. We live simply, value good food, spend time outdoors, play music, and enjoy quality time with family and friends.

If you are willing and able to help us out, we would be so grateful. We know these are challenging times for many people, and with a heavy heart, we single ourselves out for special attention. Be confident that all donations are going to enrich Torvin’s life, health and future.

It’s incredible to witness Torvin overcome his challenges. This little man has suffered more in nine months than most people suffer in a lifetime. And it’s not over for him yet. On the contrary, he’s just getting started.

We’re working with him every day, practicing all the things his team have suggested will benefit him. We are doing everything in our ability to provide him with as many opportunities as we can for him to manifest his best life.

God willing, and with your help Torvin will live as normal of a life as anyone could hope. If you’ve made it this far thank you so much for your time and interest in Torvin's life.