Meet Brighton

Brighton is a bubbly and sweet two year old from Mississippi who’s smile brightens up every room.

Every purchase in February will go to help with outstanding medical bills and equipment for Brighton not covered by insurance.

We invite you to watch her video, read her story, and subscribe to our podcast to listen to a conversation with her mom & dad.

In 2021, the anticipation of expanding their family filled Josh and Kelly Price with joy as they eagerly awaited the arrival of their newest member, whom they affectionately named Brighton, meaning ‘one who was loved.’ Throughout Kelly’s pregnancy, she received thorough monitoring. As she entered the third trimester, the reassuring news arrived that Brighton’s development was unfolding smoothly.

“This being my second pregnancy, I had mentally prepared myself, having experienced a twenty-hour labor with my son. Well, Brighton had other plans and entered the world within a swift two-hours. Despite the staff scrambling to get the doctor in the room, Brighton was ready and eager. I ended up delivering her myself,” Kelly chuckles.

The rapid labor raised concerns among the staff, suspecting insufficient contractions to aid Brighton’s breathing. Consequently, she was swiftly sent to the PICU. Remarkably, just as Brighton was prepared to make her debut in the world, she progressed rapidly out of the PICU. In a mere week, she transitioned from the cpap to the nose cannula, and just as swiftly, was off it. Following a day of observation, the family was sent home.

Once the family settled home, Brighton struggled to nurse; she seemed to have issues with the suck, swallow, breath rhythm of pattern. It seemed like another result of Brighton’s quick entry into the world, so the couple stuck to bottle feeding.

“Around four months of age, I started to suspect something was up. She was really floppy. Everytime I tried to pick Brighton up, she seemed to slip through my hands,” Kelly shares, reflecting on the early signs, “It wasn’t until she turned six months that we started to notice missed milestones.”

Despite Brighton demonstrating progress in rolling over and displaying positive signs of head and neck control, there was a noticeable lack of interest in sitting up. Concerned, the couple sought guidance from their pediatrician, who initially dismissed their worries. This marked the beginning of the Price family’s advocacy journey.

“I pushed for physical therapy and early intervention. I wanted to do everything possible to support her. I believed that if we could get ahead of this, it would make things easier in the long run,” Kelly explains.

While it took some back-and-forth with doctors, Brighton started physical therapy and was put on a three-month waitlist to see a neurologist. During this waiting period, the situation took an unexpected turn. Brighton began experiencing what was initially thought to be acid reflux. In response, the couple adapted their approach, experimenting with different feeding techniques. They discovered that if Brighton was in an upright position, fed slowly, and well-burped, the reflux seemed to dissipate.

At seven months old, growing concerns about Brighton’s health became more pronounced. Kelly vividly recalls, “Brighton started having these episodes, which we thought were seizures. They were utterly terrifying. It was as if she would go offline – confused gaze, unresponsive eyes, shaking and trembling as if chilled, followed by a distressing scream.”
Worried about their daughter’s health, Josh and Kelly promptly reached out to the neurologist to schedule an appointment. However, after the initial consultation, they were left with more questions than answers.
Returning home without the clarity they sought, the family eagerly awaited the next appointment for an EEG. Meanwhile, Brighton’s struggles with feeding persisted, and she began vomiting after every feed. Within a month, her weight dropped from the tenth percentile to the seventh percentile.
The two months of waiting seemed interminable, but finally, the day arrived for the scheduled neurology appointment. Reflecting on that pivotal day, Kelly shares,
“Brighton was having a bad day, which ended up being a blessing in disguise. By the time the neurologist entered the room, Brighton had thrown up all over me and was in the midst of an episode in the neurologist’s hands. We were immediately referred to the Ochsner Medical Center in New Orleans for testing and were advised to pack a bag for a three-day visit.”

Little did they know, those three days stretched into an unexpectedly prolonged stay of 20 days. During that stay, Brighton had everything under the sun: scans, swallow studies, MRIs, blood tests, genetic tests, EEGs, EKGs. You name it, she probably had it done. The vomiting also persisted which led doctors to give Brighton an NG tube which eventually led to a g-tube. Brighton was only nine months old.

“We left the hospital with a new formula, a feeding machine and no diagnosis. We were scared and we didn’t know what was going to happen,” Kelly shares.
Fast forward to Brighton’s tenth month, the family returned to the geneticist, eager to uncover the results of the extensive tests. Until then, Kelly had been tirelessly researching Brighton’s symptoms, stumbling upon some concerning diagnoses.
Sitting down with the geneticist, the moment of truth arrived. “The geneticist shared the diagnosis with us: Leigh Syndrome. Instantly, tears welled up in my eyes because I understood the gravity of what it meant,” Kelly recalls.

Leigh Syndrome, an uncommon genetic mitochondrial disorder, has woven its intricate threads into Brighton’s life. The cruel reality is that it is a life-limiting condition with no known cure. At the cellular level, Brighton faces a significant challenge – her body struggles to generate ATP, the vital energy currency derived from the food we consume. While most of us effortlessly produce ATP, Brighton’s complex level one status indicates a glitch early in the chain of events, leading to the myriad issues she encountered so early in her life.

Leigh Syndrome manifests in various complexes, with the severity and onset varying. Brighton’s case falls into the early stages of the chain of events, amplifying the challenges she faces. The mitochondria, often referred to as the powerhouse of the cell, reveal a stark reality – only about 20% of Brighton’s cells remain healthy, while the rest bear the burden of this relentless disorder.

In a heartbreaking twist, the disorder is classified as a spontaneous mutation; neither mom nor dad carries the genetic anomaly. It’s a cruel revelation for the family, blindsided by this previously unheard-of condition. As Kelly expresses, “We had no clue. It’s just a shock to the system.” The journey into the unknown continues, as Brighton’s resilient spirit faces an unpredictable path marked by the shadows of Leigh Syndrome.

Reflecting on the diagnosis day, Josh shares, “The hardest thing was hearing the word ‘progressive’. Looking back, I didn’t really understand what that meant. In the following months, I’ve seen Brighton unravel and disintegrate in front of our eyes. It’s painful. It breaks you. There’s a lot of sorrow and anger when you’re in a situation like this.”

With a newfound diagnosis in hand, Brighton’s journey took another unexpected turn over Christmas when she began experiencing seizures, failing to return to her baseline. The family’s holiday celebrations shifted to a hospital setting as a symptom of Leigh Syndrome emerged—Brighton’s sodium levels plummeted. To counter this, doctors adjusted her ‘mitochondrial cocktail’. After a brief hospital stay, she faced another challenge when the flu struck, but thankfully, she overcame it.

Feeling somewhat in control with the help of Brighton’s g-tube, Kelly faced a harrowing incident when she aspirated on her vomit during a nap. The frantic moments that followed led Kelly to perform CPR to restore Brighton’s breathing. Rushing to the hospital, the family was sent home shortly after, only to return the next day as Brighton’s color deteriorated.

Initially thinking it was a gastrointestinal issue, they rushed to New Orleans. However, upon arrival, Brighton’s oxygen levels had plummeted to 55. In the ER, the doctor dropped a heavy question on the couple: “She needs to be intubated, but given her prognosis, is that really what you want?” It was a moment of agonizing decision-making, with the looming fear that their precious girl might pass away before their eyes.
Amidst their despair, a pivotal moment unfolded in the ER. A doctor recognized the urgency of Brighton’s condition and insisted on immediate intubation. A lifeline extended in the nick of time.

The subsequent 70 days in the hospital marked a transformative period, culminating in Brighton receiving a tracheostomy. This life-saving intervention opened a new chapter, one where the family learned the intricacies of trach care and became adept at ensuring Brighton’s well-being. In the face of adversity, Brighton’s tenacity and the vigilant care of the PICU doctor proved to be the beacon of hope that continues to guide the family on this challenging journey.

Today Brighton is two-years-old and is affectionately known as being a bubbly, cheerful and sweet little girl. She loves all things Disney but the love she has for her brother, Sully, takes the cake.

Reflecting on this journey, Josh shares, “Before this I wasn’t very vulnerable with my emotions. Brighton has brought that out of me. I’ve learned that it helps to not sit in your pain but process your emotions, working through them knowing that joy is on the other side. You choose what you want out of this life. You choose your reality. You choose how you see this world. The events that are happening, you won’t remember them perfectly. You generalize, you distort. So if I’m going to do that, then I’m going to choose to make it positive and to see the joy. A poem comes to mind that said, ‘The furrors of sorrow dig deep but those become the well of joy’. I think that’s powerful to choose. I’m going to let it fill with joy. I’m not going to let it fill with hate or anger. Even though I feel the anger and sorrow and everything else, I’m going to process it. I’m going to move through it. I’m going to feel it, deeply. I want everyone to know that: feel it deeply. It’s there for you.”

Time to get loud shouters!

Throughout the month of February we will be shouting loud for Brighton!

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Every purchase in February will go to help with outstanding medical bills and equipment for Brighton not covered by insurance.

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