Elizabeth

The following letter was written by Christa, the mother of a Project 4031 patient, 8-year old Elizabeth.

At eight years old, Elizabeth weighs thirty pounds. She measures just under thirty-three inches tall. She doesn't only use words to speak, but relies on vibrations, tones, pitch, and body language — she calls for you with a click of her tongue, and you come. You always come.

Elizabeth has 1q24.2q25.3 microdeletion syndrome, a condition so rare there is almost no roadmap for it. She has lived her entire life on IV nutrition, her small body sustained by a line rather than a meal. She is on hospice now. And she is, in the truest sense, the reason our family gets out of bed every morning.

When music finds its way to her, something shifts. She goes still. A hand rises slowly to her ear. Her eyes change — wide and curious, searching. Who do you hear? She signs back: Music. Sister. Brother. She cannot always make out the melody, but she feels the rhythm, and she knows the people it carries. In a house with six children moving through grief and love and ordinary chaos, Elizabeth listens for her people and finds them in the beat.

She is a forever baby — not in the storybook sense, but in the real one. She will not grow up, move out, or outgrow her need for us. That reality is heavy and holy in equal measure.

Last Christmas, our family was held by Project 4031. They brought gifts for our children and funds for our Christmas dinner — not as charity, but as witness. 

Project 4031 saw us in the middle of the hardest season a family can walk through, and they said: you matter. This table matters. These children matter.

That is what Project 4031 did. They showed up where the road was darkest, and they helped to bring light in.