Makayla’s Fight for Specialized Care

Update:

On 3/29/25 Makayla was involved in a single car mini bus accident. When she was heading to Ohio with her theater group to do a college tour. Of course with her medical history things like this send this Mom into panic especially when I wasn’t with be with her. It also complicates things because when you already are suffering from neurological disorders and a recent brain surgery, a new TBI definitely adds a layer of complication.

I met Makayla at the hospital where she was diagnosed with a concussion and a worse one than they thought.

After the accident Makayla suffered concussion symptoms. Headache, dizziness, nausea, she even got the Google eye one where here eyes are kind of moving in their own and independently of each other. But with her chronic hydrocephalus and other neurological issues, it is very, very hard for us to separate what symptoms are normal what symptoms are from injuries. Also, naturally, a concussion is going to trigger migraines and exasperate some of her neurological conditions even a minor concussion.

Last night in Makayla started to have some pretty decent muscle spasms in her sleep and I had a lot of trouble waking her. This of course freaked me out and triggered a trip the the ER where yes her concussion is probably worse then they thought. But since Makayla ‘s normal is very similar to concussions she has coping mechanisms and strategies to help her which we are thankful for but again it’s very frustrating for her.

Pain medication unfortunately has been tricky with Makayla as it is doesn’t work so when her pain intensifies above her baseline, there’s not much we can do to help control it except almost at this point give her meds to knock her out.

Seizures are a concern and we will be heading to Ann Arbor where we already have a neurologist team in place that Makayla works with.

Makayla doesn’t remember much of the accident in fact, she doesn’t remember anything until the door being ripped off the bus.

Right now we don’t know how any of this is going to complicate Makayla other medical condition. And as you can imagine when you’re dealing with multiple different doctors and different cities and different practices getting everybody on the same page can sometimes take a minute. Treatment is also going to be a little bit of a hassle because concussion symptoms can go on for days months, and even sometimes be permanent from how it’s been explained to us and when you were already dealing with someone with pre-existing neurological disorders well it’s just adds an extra layer of complication.

We will update again when we have more information and sorry if this is poorly written, but this mom is exhausted.

In early 2024, my daughter Makayla, just 16 years old, began experiencing severe headaches lasting for days, along with blurry vision, numbness in her hands and feet, and other alarming symptoms. We made multiple trips to the emergency room, where we were told repeatedly that these were just migraines. Each time, she was sent home with a temporary "migraine cocktail."

Despite her worsening condition, it wasn’t until her primary care doctor urgently ordered imaging that we began to get answers. Unfortunately, even an "urgent" outpatient CT scan took six weeks to schedule.

On June 20th, Makayla underwent that scan at University of Michigan West. What was meant to be a routine outpatient visit turned into something much more serious. We were quickly pulled into a room with images of her brain that none of us could fully comprehend—but it was clear something was very wrong.

Makayla was transferred to the emergency department, and within days, she was admitted to Helen DeVos Children’s Hospital in Grand Rapids, Michigan. On June 27th, she underwent brain surgery to relieve hydrocephalus. Surgeons performed an endoscopic third ventriculostomy (ETV) to open up her third ventricle and help drain excess fluid.

We were hopeful this would resolve her symptoms, but unfortunately, it was just the beginning of a much longer journey.

Over the past year, Makayla has endured multiple extended hospitalizations and attends physical, occupational, and speech therapy two to three times per week—a routine she still follows today. Despite her determination to push through, she continues to live with debilitating headaches and other symptoms.Many days, simple tasks become impossible due to the severity of her symptoms. Despite her resilience, Makayla has told me that she no longer remembers what it feels like to be pain-free—she lives every day with a baseline headache, often at a 3 or higher on the pain scale.

Since last summer, Makayla has tried over 20 medications without meaningful relief. She rarely complains, and if you were to meet her, you might not even know the extent of her suffering. But behind her strength is a daily battle no teenager should have to fight.

In January of this year, a spinal tap confirmed that the pressure inside Makayla’s brain remained dangerously high. Then, in March, a follow-up MRI revealed additional complications: white matter disease and a narrowing (stenosis) of the small duct connecting her third and fourth cerebral ventricles. This is causing fluid to continue building up in her brain, worsening her condition.

Makayla’s situation is now complex and rare, and her medical team has recommended that we seek care outside of our region at a highly specialized clinic with the expertise and resources she needs.

As a single mother, I have been by Makayla’s side every step of the way. Due to her condition, she cannot safely be left alone for extended periods, as her memory loss, dizziness, and heightened stroke risk pose significant safety concerns. As a result, I’ve been unable to maintain full-time employment, and the financial strain has been overwhelming. Despite insurance, we have accrued tens of thousands of dollars in medical expenses, and the need to travel out of state for specialized care will only add to these costs.

This has been the hardest season of our lives. Watching my daughter fight through pain every single day while carrying the uncertainty of her future is something no parent should ever have to experience. Makayla is incredibly brave, but we cannot do this alone. We are humbly asking for your help. Any donation, no matter the size, will directly support Makayla’s medical journey—whether it’s covering travel, lodging, meals during hospital stays, or mounting medical bills. Even sharing this fundraiser helps us immensely.

From the bottom of my heart, thank you for reading Makayla’s story and for supporting us during this difficult time.