Our daughter Zelda is only three years old, but her life has already been filled with more medical challenges than most people face in a lifetime. She has multiple life-threatening and rare conditions — heart defects that will require surgeries performed by only two surgeons in the world, a VP shunt for hydrocephalus, genetic syndromes that put her at risk for liver failure, cystic kidney disease, and gradual blindness, and most recently, a skull that fused too early, requiring repeated invasive cranial vault reconstruction surgeries.

Caring for Zelda full-time means I had to leave my midwifery studies, which would have contributed to our family’s income. Our family of seven now relies solely on my partner’s blue-collar income and the bit of money he receives as a disabled veteran. With five children and Montana’s high housing costs, buying a home that keeps Zelda near the hospitals and specialists she needs is impossible without help.

Every day is a careful balance between managing Zelda’s complex care, keeping our family stable, and hoping for a future where we can provide her the home she desperately needs. Your support could make that hope a reality.

Our family of seven, including our daughter Zelda, who faces a lifetime of complex and life-threatening medical conditions, is dreaming of a stable home near the care Zelda needs. I was pursuing a midwifery degree, which would have contributed to our family’s future income, but I had to leave school to care for Zelda full-time. With five children and now only my partner’s income to survive on, buying a home on our own is impossible without a substantial down payment. Zelda requires frequent, specialized medical care — from open heart surgeries to cranial vault reconstructions — and a home that is safe, stable, and near the hospitals she needs would be life-changing for our family. Any help toward making this dream a reality means the world to us.

I became pregnant with Zelda while pursuing a midwifery degree. My education would have contributed to our family’s income, but balancing classes, being on call to attend births, and caring for our four other children became too chaotic during my pregnancy. I had planned to return after giving birth to Zelda, but her medical complications changed everything — I now care for her full-time. With five children and now only my partner’s income to rely on, Montana’s high housing costs and comparatively low wages make buying a home on our own impossible. We have crunched the numbers so many times and tried to figure out how to make it work, but we simply cannot.

Even considering a move to a rural and remote area of Montana, where housing is more affordable, isn’t safe for Zelda. Her care requires frequent appointments, sometimes emergencies, and Montana winters make long drives to specialized hospitals dangerous and sometimes downright impossible when roads and mountain passes are closed down. Her recent diagnosis of acquired multi-suture craniosynostosis adds to these challenges: she will require multiple cranial vault reconstruction surgeries, each involving shaving her head, removing her skull, cutting it into pieces, and reconstructing it with plates and screws - basically, we will be manually expanding her skull until she is done growing. These procedures will repeat as her brain grows through childhood and adolescence.

Around 34 weeks pregnant, an ultrasound revealed Zelda had heart defects: aortic stenosis and pulmonary branch stenosis. She was born at 39 weeks and immediately rushed to the NICU. After nine days, we thought she was stable enough to go home — but soon after, she was diagnosed with brain hemorrhages (subarachnoid and intraventricular). Zelda was placed on life support and rushed via life-flight to a children’s hospital in another state. Watching her so small and fragile surrounded by frantic doctors was the most terrifying moment of my life. She survived, but the brain injury had resulted in permanent damage, and she developed hydrocephalus, which requires a VP shunt to drain fluid from her brain manually. VP shunts are prone to failure, infection, or clogging; while Zelda’s shunt is currently healthy, we live with the knowledge that revisions may be necessary at any time.

Genetic testing later revealed that Zelda has Alagille syndrome and CRB2-related syndrome. Alagille syndrome affects the heart, liver, and spine. Zelda has a spinal deformity and liver disease, in addition to her heart defects. Many children with Alagille syndrome eventually require a liver transplant, as the disease can lead to liver failure, but we are remaining hopeful that we don't have to go down that road.

CRB2-related syndrome is extremely rare, with fewer than 30 known cases worldwide. It can cause cystic kidney disease and gradual blindness. Zelda has an eye defect that we monitor closely.

By age one, Zelda underwent a heart procedure to expand narrowed areas of her heart using balloon catheters. While the expansion wasn’t successful, it allowed doctors to map her heart anatomy in detail. She will eventually require a complex pulmonary branch stenosis surgery, one of only two surgeons in the world can perform this 20+ hour operation, untangling and reconstructing each tiny vessel under a microscope. Even routine procedures can be dangerous: following the heart operation, Zelda developed a blood clot in her thigh and required three months of twice-daily blood thinner injections in her sides, leaving bruises and scar tissue. Many of the providers that see Zelda have some variation of a saying, which is "If it's going to happen, it's going to happen to Zelda".

At around two years old, Zelda began to develop intense migraines several times a week, causing her to scream, cry, press her fingers into her eyes, and vomit. These episodes continue and are debilitating and frightening, both for her and for us.

Most recently, a CT scan revealed Zelda has acquired multi-suture craniosynostosis — which means her skull seams fused prematurely. This is a rare complication caused by the shunting process. Now, to allow her brain to have space to grow, she will need multiple cranial vault reconstructions. Cranial vault reconstructions are invasive procedures that remove her skull, cut it into pieces, and rebuild it with plates and screws. These surgeries will occur repeatedly throughout childhood and adolescence.

Zelda loves her long, blonde, curly hair and having to shave her head for surgeries is heartbreaking — a small but significant loss of childhood joy on top of everything else she has endured. Having this most recent diagnosis dropped on us was really hard on everyone. Just when we thought we had finally figured Zelda out, more and more stuff continues to unfold.

Yes, she is strong, but only because she has no other choice. At the end of the day she is just like any other little girl. She does not possess super-human strength, nor does she have the ability to endure more than any other child could. She suffers, feels pain, experiences fear, and cries just as your child would if they were in Zelda’s shoes.

We are a family of seven, with children ages 3, 7, 9, 9, and 11. Our dream is to find a stable home near hospitals that can care for Zelda, with space for her to transition into independence as she grows — an apartment or ADU in the home where she can have support, privacy, and long-term stability. Life is not easy for an adult with disabilities and we want to think not just "in the now" but also in the future for Zelda. We want to give her the best chance at independence while remaining close to family and medical care, and also having long term housing security -even as an adult - because parenting any child does not stop the day they turn 18, but that is even more true when you have a child with special needs.

A stable home that is ours would be life-changing for our family. Montana’s high housing costs and our now limited income makes purchasing a home impossible without a substantial down payment. The amount we are asking reflects the minimum of what is truly needed to secure a sustainable monthly payment and a safe home for our family in areas where Zelda would have access to the medical care she needs.

We realize this a very big ask, but every contribution — big or small — moves us closer to a foundation where our family can feel secure, hopefully one day obtain a sustainable mortgage on a home that can grow with our family's evolving needs, and Zelda can face her future with the care and stability that she needs both now and in the distant future. Thank you for helping our family find a place to call home.