Kristin's Story

Kirstin’s story begins in July of 2024 when she was only 9 months old, a happy little girl who was developing normally.

It was around this time that we started to notice she was becoming lethargic and was looking very long and skinny, as if she was losing weight instead of gaining it. Of course, we were concerned and were thinking that maybe she was ‘backed up’ so we scheduled an appointment with her gastrointestinal (GI) doctor to ensure everything was okay.

What we thought was going to be a normal visit with the GI doctor and a simple diagnosis turned into something we never could have imagined and changed our lives forever. We arrived at the GI appointment, and not too long after, they had Kirstin transferred to another hospital where she had undergone extensive testing. 

Kirstin was poked, prodded, and scanned for 2 weeks while the doctors were doing every test possible to figure out what was going on. It was then that they told us she had a tumor in her brain.

To say that Kirstin’s father and I were distraught doesn’t do it justice. If I’m being honest, when they first told us, I may have used some choice words with them. I was so angry, confused, sad, and scared all at one time. I didn’t know what to do.

At that point, they had transferred us again to another hospital, this time we went to John's Hopkins Oncology. The brain tumour was found on July 23, 2024, and Kirstin was scheduled for her first surgery on July 25, 2024. Kirstin has spent an entire month in the hospital after this due to the malignancy of the tumour. We got through the next several months the best we could.

Kirstin had started to learn to walk, was laughing and beginning to talk, and was overall still a happy little girl. By the time Kirstin was 1 year and 5 months old, she had received a G-Tube, chemotherapy, radiation, and what ended up being a couple of bone marrow transplants. After receiving her second bone marrow transplant,t Kirstin suffered from a stroke, and only a month later, at 1 year and 6 months old, she went into cardiac arrest. The next 5 months were spent admitted to the hospital, and Kirstin received a trach in order to help her breathe and keep her oxygen levels up.

On August 25, 2025, Kirstin suffered from a second stroke, and this one had drastically impacted her movement and coordination. She is no longer able to sit up by herself, has very limited movements, cannot have anything by mouth,h and must use a GJ tube, and the only words she says now are ‘mamma’ and ‘dadda’. During this time, I was also pregnant with my youngest child, Micheal, and gave birth right after Kirstin suffered from her second stroke. Kirstin is now in palliative/complex care, will be receiving surgery to close her eyelid in order to decrease any additional damage, and is being enrolled in the Maryland School for the Blind.

It has not been easy over the last 2 years, and Kirstin has gone through more in her life than most people could even imagine, but that doesn’t stop us. We may only be home for 2 to 3 weeks at a time before needing to be readmitted into the hospital; however, no matter where we are, Kirstin still manages to be the same happy little girl, enjoys laughing, and especially loves being around her big sister, Karen, and baby brother Michael. 

We’ve been so blessed by countless organizations and individuals who have helped us through this journey. Tides of Grace, Gold In Fight, Pinky Swear, Queen Anne’s County Community Partnership for Children and Families, and the Sudlersville Elementary Judy Center were with us from the beginning and helped us receive needed clothing, supplies, gas cards, moral support, and parking passes for all of the hospital visits.

We've been able to stay at the Ronald McDonald house several times while waiting for medical procedures, and continue to receive help from the hospital social workers and Elizabeth Miller from the Sudlersville Elementary Judy Center Early Learning Hub. The battle isn’t over yet, and we work every day to ensure that Kirstin has the best childhood possible.