Ella's Story

Ella is a sweet three year old who, with her twin brother, completed our family in July 2019. Ella was born with a rare genetic disorder, chromosome 3p deletion. Since there’s not much known, we still have a lot to learn about this disorder.

Ella lived in the NICU at Phoenix Children’s for the first month of her life. She had her first surgery at two days old for choanal atresia (the opening from her nose to her throat was completely closed off by bone).

She has had multiple stays in the PICU, and is well known at PCH for being tiny, but mighty!

She uses a bipap at night, and we are completely set up at home like a mini hospital with oxygen, suction, nebulizers etc. 

Ella is also completely gtube dependent, and has been receiving intensive feeding therapy. She wears cute pink glasses, has Baha hearing aids, and uses AFO braces to help keep her feet flat. She loves keeping up with her brother, so we are sure she will be running around by Christmas. 

Ella sees a lot of the amazing specialists at PCH.  Audiology, GI, Cardiology, Neurology, ENT to name a few, so we are constantly attending follow up appointments and having routine surgeries.

Ella’s sweet and loving demeanor brightens everyone’s day! She’s the happiest little girl, and we are so blessed that she’s ours.