DiGeorge Syndrome... 22Q... VCFS... all names for the same genetic disorder that have plagued baby Rachel since the day she was born.

"The best way explained by me from the doctor, if you take 10 dictionaries and take one dictionary out, anything that's in that one dictionary is what's missing in her genetic makeup."

Her 22nd chromosome is missing information, leaving her with a hole in her heart, improperly formed valves, respiratory problems, and a plethora of other medical complications.

At less than 2-years old, she's already undergone 9 surgeries and has a pacemaker.

Her days are spent hooked up to a feeding tube, a ventilator, a trach-cuff, and a plethora of medications.

"There would be days I'd just sit down and cry and not know what to do. Were we going to lose her? Were we not going to lose her?"

She was born into a military family. Her father Andy Skahl works for the Army Reserve, and her mother also named Rachel used to be with the 148th Fighter Wing out of Duluth.

But, the true soldier in this family, is the one who can't even speak, hasn't learned how to walk, and is unable to even breath on her own.

"Yes, the strongest one is in the crib, very much so."

She's a fighter - and continues to be a survivor against unfavorable odds.

"She's a very very strong-willed little girl."

Ater 19 months of fighting, and living in the hospital, the only place she has ever known, baby Rachel finally gets to come home.

"It's the best Christmas present you could ask for, having her home, you know, having her alive, and having her home."

Filled with more medical equipment than toys, baby Rachel's life may not be exactly the typical one.

A full-time nurse watches her during the days and mom takes over through the nights.

Despite nearly 3-million dollars in medical bills, baby Rachel's treatment remains top priority.

"You never imagine what you could or would do for them if it was asked of you, all those mornings you'd stay in the hospital morning and night, and the things you'd do to make them better, the sacrifices you'd make."

The mother Rachel still wonders whether or not her baby will ever have a normal life, but they will continue to hope for the best.
Meantime, the focus is on getting her to sit up each day, working on speech and swallowing, and strengthening her lungs with the hope of getting her off the ventilation system.

"Kiss, you're alright sweetie, you're alright."