I can not begin to imagine what this family is going thru, please help if you can, and share this! Friends please read this to

get a good understanding of what Makenzie’s go fund me is for. This is written by a family member.

For those who don’t know her… Makenzie is a vibrant and fun 11 year old girl who loves school, friends, horses, and competitive swimming. And then, in December, our world flipped on its axis.

Early in December, she began complaining of a severe headache. Headaches are nothing new for Kenzie. She has had intermittent migraines with “visual auras”over the last several years. But after 9 days of failed outpatient treatment, we headed to the ER, where an MRI revealed a large (grade 4) Occipital AVM.

AVMs or Arteriosclerosis-Venous Malformations are an area of blood vessels that, instead of forming in straight lines, form in a bundle (or, as Kenzie likes to say, a knot). Instead of having clear high-pressure tolerant arteries and low pressure venous drainage, these vessels are mismatched and hopelessly tangled. Because of this malformation, there is also no capillary bed within her “knot” to allow oxygen and nutrient to exchange. AVMs are the leading cause of stroke in the pediatric population and are often not discovered unless one of those vessels ruptures and bleeds.

We were quickly transferred to OHSU and placed in the amazing care of their neurosurgical team for ongoing testing. This included a brain angiogram and that showed her AVM was larger than originally thought, measuring about 5cm x 3cm. During that hospitalization, it was discovered that her AVM has already started to cause her permanent side effects. She has lost a good portion of her left upper field of vision in both eyes.

We were sent home with some decisions to make… Treatment options for AVM include taking a “wait and see” approach (The risk of AVM rupture is about 2-4% per year, and we have been told that due to the nature of her particular lesion, rupture would cause catastrophic damage possibly extending beyond just her sight), Embolization (not an option for hers due to the size and the number of feeding vessels), Radio-surgery (aka Gamma Knife, still not a first line option for her because of the amount of radiation it would require, not to mention it only provides a 70% success rate over the course of 3-5 years. This option may be used as an adjunct therapy if they are not able to safely remove her entire lesion during the initial surgery), and Neurosurgery (which is the plan). Her surgical date is set for 2/6/24 and the surgery itself is estimated to be >12 hours in length.

We so appreciate your support to help offset the initial medical costs of transport and testing. As well and the larger costs related to the hospitalization and surgery itself. Kenzie will have a long road ahead of her with occupational therapies of various types, and lots of traveling to Portland to see her specialists. We just want you to know that any money raised will be going directly to her medical costs, travel expenses, and potentially lost wages for mom and/or dad if we end up with a prolonged hospitalization. We so appreciate all of our friends and family who are willing to help us get through this challenging time.

Once we know a little more about how she does following surgery, we will create a meal-train for the first few weeks we are home so we can concentrate on helping Kenzie relearn some skills she may struggle with. Those dates will be determined once we know how long we will be in the Portland area for her immediate post-operative period