Zelda is our 5 year old nonverbal, G-tube fed, autistic daughter who is currently receiving chemotherapy for an inoperable brain tumor.

Medical supplies/ equipment needed: specialized bed, AFOs, specialized high chair and stroller, monthly medications, monthly g-tube feeding supplies.

This is not something our family ever enjoys doing, but at this time, we are asking for assistance for Zelda. The financial burden is becoming too great, and we have been denied state assistance time and again. We are currently in the process with the Social Security Administration to get Zelda deemed as disabled in order for us to try again to get long-term medicaid resources for Zelda.

In the meantime, however, the medical bills are continuing to grow. We have done our shirt sales, and unfortunately, we have not raised nearly enough. We do have a 5k fundraiser we are planning for next year for those that are interested.

Zelda’s medical costs will never go away. Her tumor is inoperable. She will be on chemotherapy treatments for the next two years at least. The monthly cost of all of her at home meds and feeding tube supplies alone are around $600 out of pocket. She gets an MRI, echo, EKG, every 4-6months, blood work done every two weeks, chemo once per month, she sees various specialists throughout the year, she needs a few pieces of medical equipment now that she is outgrowing her current highchair for her feedings and her stroller (AFOs, specialized chair and stroller, specialized bed). Aside from everything involved with the tumor, Zelda is also level 3 autistic and is nonverbal. Because all of Zelda’s needs, Kat (her mother for those that do not know us.), is not able to work. She stays home to take care of Zelda.

The largest goal we want to meet is to be able to get a specialized bed for Zelda. Our largest issue with Zelda’s needs are her sleeping issues. She very rarely sleeps through the night, even with her current sleeping medications. Zelda is a very curious child and has absolutely no sense of fear. She is also a climber. No matter how much we have baby proofed the house she always finds a way around it. Although Zelda, does not currently experience seizures, she is at risk of having them. She currently cosleeps with us so that we can watch her throughout the night. This bed has motion sensors, camera, music for soothing, and zips from the outside. It has everything needed to give us the peace of mind that Zelda is sleeping safely while having items that children like Zelda find soothing enough to help them sleep. Our insurance denied us saying it wasn’t a medical necessity. The bed itself is about $12,000.

Along with getting this bed and a specialized high chair and stroller for Zelda, we need to pay towards some of her outstanding medical bills and keep up with her monthly medications and feeding tube supplies. Trying to juggle the medical expenses, living expenses for a household of 6, and new school year clothes and supplies for 4 kids, it’s just too much.

We are at the point where we just simply need help. No matter how much we hate asking, we just don’t know what else to do. Please consider donating to Zelda’s medical fund or simply share if you are unable to.

Thank you again for all the love and support you have all shown our family these past few years.

Zelda’s medical journey:

Zelda is our 5 year old daughter who has been fighting a brain tumor for 3 years. When Zelda was 6 months old her father and I noticed that she wasn't meeting important milestones, like sitting up on her own. It wasn't until she was 9 months old and we found a new pediatrician that our concerns about Zelda started to be heard. Back then all of us had concerns that she was showing signs of autism so we started the process of being seen by a developmental pediatrician which was a 5 month waiting list. In the meantime Zelda started physical therapy to get her to crawl. In September of 2021, Zelda was 14 months old and she started to show what we thought was a lazy eye. The first time her eye doctor looked at her eyes, she had no concerns. Zelda also started to struggle with eating, she became very picky and her father and I had a difficult time getting her to eat anything that wasn't "crunchy" or a bottle of milk. Around that same time we were able to see her developmental pediatrician and start the process of getting her evaluated for autism, however, she could not complete the testing yet because she was not walking on her own. The developmental pediatrician noticed Zelda's "lazy eye" and urged us to make another appointment with her eye doctor. Which, we were unable to be seen until December 2021. Over those next few months Zelda's feeding issues persisted and she was still not walking on her own even with the progress she made in physical therapy. It wasn't until late February 2022 that we finally started getting answers. Zelda's "lazy eye" seemed to be making weird side-to-side movements. After a specialist saw her eye she stated that Zelda's eye movements were called nystagmus and immediately ordered an MRI to be done ASAP. I was due to give birth with our son that following week, so we were able (and safely) got Zelda's MRI scheduled for April. The MRI showed a tumor located on her brain stem. Those following months things moved very fast. Zelda was scheduled for a brain surgery for a biopsy in May. However, after being admitted the routine blood tests showed Zelda was severely anemic. An issue that was due to Zelda's regression with her eating. So, Zelda was admitted and given iron infusions for four days. We were immediately contacted to return to the hospital that following week to get a gastrointestinal tube placed. Which was something that we were in the talks of doing before the tumor was even found because of her issues with eating. After Zelda healed from that surgery and her levels started to improve, she was scheduled for brain surgery in June 2022. Because of the location of the tumor and how immersed it is with brain tissue, the tumor was unable to be removed but the surgeons were able to get enough for a biopsy. The results came back stating that the tumor is slow growing and non aggressive. In September 2022, Zelda started a two year long treatment, it was not a traditional chemo treatment, but a mek inhibitor medication to be given at home, with the hopes of shrinking and slowing down the growth of the tumor. Zelda had also started speech therapy along with her physical therapy, and feeding therapy. Even though her tumor was found her developmental pediatrician and neurologist still wanted her tested for autism as some of the symptoms she had did not quite line up with symptoms of a brain tumor like hers. Over the next two years Zelda made a lot improvements within her therapies and even started Preschool. After her testing with her developmental pediatrician was complete, Zelda was finally diagnosed with level 3 autism and we were able to start an IEP with her school. During one of Zelda's routine MRI's an auditory test was also done due to concerns about hearing issues. It was determined that Zelda is fully deaf in her right ear because of the location of the tumor basically cutting off that nerve. Unfortunately Zelda's MRI's started to show slight growth and the mek inhibitor was causing issues with anemia; so after two years of being on that medication it was decided that Zelda would start traditional chemotherapy infusions in December 2024. So, once per month for the next two years Zelda is getting treatments. We have struggled with nausea a bit at first but luckily for now we have found a regimen that works to keep that nausea at bay.

RECENT UPDATE: As of her July 30, 2025 blood work Zelda was deemed neutropenic, meaning she does not have enough white blood cells to fight off infections. We are hoping her levels increase before school, but there is a chance she will be starting school late this year. With her most recent infusion she seemed to have some headaches and possible leg pain due to the chemo. It is difficult to say for sure what kind of pain because she is nonverbal and all we have to go by is her body language and her different cries. This cycle was especially difficult because she’s had to miss out on end-of-the-summer outings with her siblings. But she did get a lot of much needed one on one time with Mat. We are nearing her next infusion and she has been back to her happy and playful self this past week. We did have some good news and are now working with the Make-A-Wish foundation to get Zelda a play area for our home.

Throughout all of this Zelda, has remained a light in all of our lives. She is always so happy, playful, and loving. We are forever grateful to our community, all of those who have helped in various ways not just monetary. We wouldn't be able to do this without all of you.