My name is Natashka. I am a solo momma to two beautiful blessings. They are my Irish twins at 9.5 months apart. My youngest was born 31weeks in the dot weighing estimated 3lb 5oz. The start of her medical life journey she spend 57 days in the NICU and sent on “grow at home “ program which comes with NG tube placed while she worked on bottle feeds. At just a few days old she was diagnosed with a rare genetic disease called Crouzon Syndrome.

Crouzon syndrome is a rare genetic disorder characterized by the premature fusion of skull bones, leading to abnormal head shape and facial features.

Due to the amount of medical care my youngest needs I am a stay at home, I work part time with program that helps medically complex kiddos parents get some kind of finances, so i work limited hours a week with my youngest.

Her first skull surgery she was just three months old. It was a cranial vault distraction with hardware placed to make room of skull to allow the space for brain to grow. All her soft spots have prematurely closed. Since first surgery there has been a trach placed for obstruction sleep apnea and aspiration, Gtube to this last year GJ tube replaced five times, two cranial vault distraction with distractors, two chiari malformations correction surgery, one frontal orbital advancement, endoscopic in the third ventricle in brain. She also got almost three years later a triple scoping from ent, pulmonary, and GI. It shows evidence of aspiration, she has reflux and still unsure the severity

allot of these procedures happened due to constant advocacy.

the current facility can do so much for Crouzon syndrome and everything that follows with it. I’ve reached out to another surgeon out of state for a second opinion in Texas for Craniofacial clinic. I also found out recently the testings that needs to be done the facility she goes does not have motility specialists to further figure out why the feeding is going backwards. A referral has been placed for motility specialists just couple days ago. My daughter’s belly is very much extended, she’s complaining of pain. She needs a full bowel movement clearance and to see why/what’s going on with her abdomen and there’s laundry list of things going on that unfortunately it’s not being attended to.

I’m reaching out to the community as a solo no village momma. The funds will go to gas, lodging, food and possibly a couple bills.

Im in major need to drive to Washington Seattles Children’s Hospital ER to get my youngest to be seen. The trip there and back will be a bit longer as with my trach/gj tube babe will need extra stops.

I got to be honest this is very much out of my comfort zone- but more and more I’m seeing my daughter really needs to get to another hospital and much sooner than later. And unfortunately there isn’t one in Oregon that can properly care for what she needs.

Want to advance say thank you all, blessings all! If not able to donate please share, and all the prayers YHWH welcome!

Much love,

Natashka

Hope & Chaos

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