Lavender was born in December 2023. After an uneventful pregnancy and birth, Lavender’s newborn screening came back positive for SCID (severe combined immunodeficiency) and we were thrown into a great unknown of figuring out what was going on with Lavender. After many blood tests and genetic testing, we found our sweet baby has an ultra-rare disease called ataxia-telangiectasia (A-T) at just a day shy of two months old.

We were told that she would eventually lose her ability to walk, she will struggle to speak and swallow, and that she would be incredibly prone to cancer and lung infections. There is no cure or treatments currently that can stall or halt the progression of this devastating disease, and children typically succumb to malignancies in their teens or 20s.