Support Gavin's Fight for Health and Hope

Help Gavin and Our Family Heal: A Year of Trials and Uncertainty

The past year has been one of unimaginable challenges for our family-

This time last year, Gavin’s seizures that we were struggling to manage throughout 2023 took on a new intensity when we could not get his body to take a breath, causing his oxygen to tank and his lips and face to change colors. With EMS on their way, the rescue med we gave him upon seizure onset kicked in, stopping the seizure, allowing him to breathe again, and then he passed out from the sedative. As soon as we could, we saw his PCP. Within 3 days, Gavin had oxygen tanks and a machine delivered. The following day was Thanksgiving (2023); without the machine, we may not have been able to help him in time when he had a seizure more intense than the last.

In March, for me, what started as a trip to the emergency room for shortness of breath quickly unraveled into something far more serious: I was asked if anyone has ever told me I had congestive heart failure. A CT scan showing fluid retention in my lungs, lab results, and decreased oxygen saturation lined up. Those words brought sadness, fear, and another journey filled with uncertainty and unanswered questions.

While I was grappling with my own health, May brought us another devastating blow. Gavin, our courageous and spirited little boy, underwent surgery to implant a Baclofen pump. This was meant to be our last step in getting him his much-needed hip surgery that we had been jumping through hoops for 2 years for. This procedure is a very successful surgery that is done all the time and would ease his cerebral palsy symptoms, reducing muscle tightness, pain, and preventing his body from pulling his hips out of place again after hip surgery. Instead of the relief we expected, the surgery became the start of a medical nightmare that has caused our family significant pain and fear that still affects us every day. As we continue to fight for answers for both Gavin and me.

The evening after the procedure, Gavin spiked a fever and had pain that was hard to control and discomfort that I can’t even find words to describe. The pump looked too big for his little body, and he couldn’t cough, laugh, sleep, or cry due to increased pain. He was on Tylenol, morphine, oxycodone, and after hours of unexplained fever, they gave him ibuprofen earlier than what they normally allow after a surgery involving the spine due to increased bleeding risk. His temp broke with the ibuprofen, and his discomfort caused him to need all these pain meds around the clock (which likely masked the fever). With pain still uncontrolled and labs not giving answers, they started treating him for Baclofen withdrawal, which wasn’t clear to me since we never stopped his oral Baclofen. The plan was to titrate them at levels to replace the oral Baclofen with the pump-given Baclofen. Two days after the pump was placed, with pain loosely controlled and reassuring lab results and no return of fever, they discharged us to go home. Car packed, papers signed, the only thing left to do was to change and grab Gavin. With that change, we were alarmed by fluid retention within his diaper area—it looked so painful, but we seemed to be the only ones alarmed. They gave him a diuretic and stated they gave him a lot of fluids while treating him for Baclofen withdrawal and kept us overnight again. The next day, we were discharged with them stating the swelling would continue to go down, and again his labs looked reassuring. Less than 24 hours later and no sleep, I was calling neurosurgery unsure of the continued swelling. They wanted us to take him back up there (2+ hours away). He was so swollen there was no way he could be placed in his car seat. We were skimming his camera feed from that morning to grab pictures for neurosurgery and realized how much just his face had swelled in a matter of 2-3 hours. We called EMS, and away we went to the ER. He had gained 15 pounds since the day he went into surgery; he was no longer able to urinate, and even with a catheter placed, they had to manually pull the urine from his body. They couldn’t admit him to our hospital because they didn’t have a large enough team to support what he was needing as they could not figure out what was going on. Via directions from the PICU in Portland, they did imaging, regular labs, and were regularly checking his bladder with an ultrasound to make sure it wasn’t holding too much. They started new antibiotics and started treating him for a suspected septic infection, and we had to wait for them to have an available bed in Portland. The next morning, his blood pressure started slowly dropping, and they took him up to Portland. They called me on my way up, asking me if anyone had touched base with me about Gavin yet. He had fecal matter leaking from his incision site and a CT showing super infection leading up the catheter line towards his spine. They said they have no idea what it will look like once they get in there and listed the possibilities to get consent to prep Gavin. I made it to Gavin with enough time to barely see him, tell him how much I love him, and be able to let Logan and Chloe tell him they love him over the phone. He was so swollen he could barely open his eyes. He was scared, I was scared, then he started vomiting fecal matter, and they whisked him away as the surgeons and staff spoke to me from all directions. That feeling is worse than I could have ever imagined. I sat alone as I waited for answers.

Gavin is an amazing kid; his body fought for him with so much strength. We couldn’t have been more thankful when they were wheeling him back into his room after surgery that could have easily taken half the day or multiple surgeries (if he lost too much blood) only just a couple hours later. With what we were told before surgery, I feel it went as well as it possibly could have. They stopped the leak, removed the pump, and were able to clean the infection out. This left a massive wound requiring a wound vac for the healing process and to help pull it closed. He spent weeks in the hospital being treated with heavy IV antibiotics while waiting for cultures to make sure the antibiotics were covering the right bacteria. The strength he showed during those weeks was nothing short of extraordinary. He came home the last week of May with the wound vac, 3 antibiotics, and was still needing pain meds but thankfully much less except around wound vac changes.

The nightmare didn’t end there. Gavin’s journey has been filled with setbacks and new crises. A few days after the antibiotics were complete, his wound vac was pulling alarming colored discharge. They were able to remove the wound vac, and his PCP arranged an outpatient CT scan due to his newfound anxiety around going to the hospital/doctor’s office. He was pulled from the CT scan as he choked and couldn’t breathe; he suffered a severe allergic reaction to the contrast dye, leaving his face swollen and his body covered in hives. This reaction started a chain reaction of hive outbreaks, causing him to need Benadryl every 4 hours. Seeing his PCP, we found a link to maybe a food reaction since it was worse when his feeds would be increased. We went through 6 formulas and started trying foods individually, just trying to make sure he gets his needed fluid and nutrition. This continued for weeks before we could see an allergist. Each time we thought we could let our guard down, another emergency brought us back to the hospital.

In July, Gavin had a dystonic storm. Hours in the emergency room offered little clarity, as doctors struggled to piece together what was happening. This has left us with him having abnormal and extreme reactions to meds he has been on for years. We contacted all his doctors and spent a couple of days admitted in Portland, only to be left without answers and without any direction to go.

By August, Gavin was hospitalized again, this time for severe dehydration and abdominal pain. Despite countless tests, the underlying cause of his symptoms remains unclear and continues to affect him daily, some more heavily than others. We’re now exploring the possibility of movement disorders, seizure activity, and dysautonomia—anything that could explain the relentless pain and distress he experiences. Still, answers feel painfully out of reach; we are waiting for test results to figure out if any of it is epileptic.

As Gavin battles these physical challenges, the emotional toll on our family has been profound. Gavin’s once-bright spirit now carries the weight of the trauma he’s endured. The countless procedures, hospital stays, and emergencies have left marks that aren’t easily healed. Watching him struggle with fear and frustration is a grief that words cannot capture. We have had periods of time where Gavin truly was unable to be himself. Feeling a lack of support in helping Gavin has been a battle I am too tired to keep fighting. We spend many days full of movies and snuggles and others running around without guidance in hopes of finding the right track to getting him the help he seriously needs.

At the same time, my own health continues to decline. For years, it has been declining slowly, but the past couple have been the hardest on my body. After several denied referrals and a new PCP, I finally got in to see the rheumatologist. We thought we might find answers in a diagnosis like systemic lupus erythematosus (SLE) or another connective tissue disease, but instead, the tests pointed elsewhere. The rheumatologist recommended that I be evaluated for lymphoproliferative disorders, adding yet another layer of fear and confusion to an already overwhelming situation. The uncertainty of my diagnosis looms heavily over us; I just want some relief for my body having constant flare-ups of new and worsening symptoms. Every day is a balancing act, trying to manage my symptoms while being there for Gavin and his brother, Logan. It feels as though life has become a series of unanswered questions and impossible, unfair choices.

Our Immediate Needs

The stress of managing these crises has placed a heavy financial burden on us. We’re fighting to keep our home and meet our most basic needs while ensuring our family’s survival and recovery.

We are seeking support to address these critical areas:

Housing and Basic Utilities: We are behind on rent and essential bills; without assistance, we are in fear of losing our home. Any assistance to help us catch up would provide much-needed stability and relief.

Transportation: Our vehicle is unreliable, and Gavin will soon need a wheelchair ramp. We urgently need help repairing it or leads toward a new vehicle.

Medical and Therapy Costs: Funds are needed for alternate therapies, tests like pharmacogenomic testing, and natural treatments such as Lion’s Mane to help Gavin heal.

Clothing and Essentials: Both Gavin and Logan need new clothing, especially with the colder months and holidays approaching.

Gavin’s Emotional Recovery: The trauma Gavin has endured weighs heavily on his spirit. Support for therapies and resources that nurture his emotional well-being is a priority.

Recognizing Logan: This kid is the best big brother. He is kind and compassionate. Determined to always do his best (works hard at school in his first year in middle school maintaining all A’s, being a good friend and participating in extracurricular activities and volunteer work). He has been wanting to get into a couple of programs that I can’t even look at the possibility of due to affordability.

How You Can Help

Your kindness can provide relief in these incredibly trying times. Here's how you can help:

Donate: Every contribution, no matter the size, will help us meet immediate needs and plan for Gavin’s recovery.

Share: Spreading our story can connect us with others who may offer advice, leads, or resources.

Provide Leads: If you know of affordable vehicle options, local resources for housing assistance, or therapy programs, please reach out. I can be reached through this page.

We share this story to give voice to the depth of our struggle and the strength of our hope. Despite everything, we continue to move forward, holding on to the love and resilience that keeps us together. Gavin’s courage inspires us, even as we grieve for the carefree days that feel so far away.

Your support means more than words can express. Whether it’s through sharing our story, offering advice, or simply standing with us in spirit, we are grateful for every act of kindness. You can find out more about Gavin’s journey on Facebook at www.facebook.com/groups/growingwithgavin

Thank you for taking in our story and for helping us carry this weight. We will keep fighting for Gavin’s quality of life, my own health, and hold the hope that one day we can look back on this year as a testament to the power of love and resilience our family shares.

With deepest gratitude, Danielle, Logan, and Gavin