Hello, my name is Krystina, I am a sweet 6 1/2 month old. I would like you to get to know me a bit.

I have been hospitalized 6 months now since birth.. transferred from one hospital to another. I was just recently diagnosed with MIRAGE disease and also Alcalasia of the esophagus. Found out by whole rare genome sequencing blood test.

MIRAGE syndrome is a rare disorder characterized by six core features: myelodysplasia, infection, restriction of growth, adrenal hypoplasia, genital phenotypes, and enteropathy. It has only been known since 2016, with only about 60 families around the world with this diagnosis.. very few in Canada.

I have had 20 pnemonias to date, hundreds of tests, been off and on the BIPAP/CPAP machine, now I am currently on Oxygen 24/7.

I am constantly aspirating into my lungs despite multiple dilations and interventions.

All I want to do is survive but there is currently no treatment for MIRAGE. Most of us don’t survive past 3 years of age.

I am asking to for help to pay for our hospital stay, supplies like oxygen machines, NG pump for feeding as our insurance doesn’t cover everything..

Thank you for your compassion in these heart breaking moments like these.