Sarah was diagnosed with Thanatophoric Dysplasia Type 1 when she was 22 weeks gestational age. It was confirmed via genetic testing, and a fetal MRI showed she only had 23% of the lung volume of an average baby her age. Every doctor we have had said she could not survive outside the womb, even with medical supports (and some doubted she would survive to birth or the birthing process). She was born at 32 weeks gestation, and continues to grow and survive. She is currently on ventilator support for breathing, but needs to grow for several more months and have 2 surgeries, a tracheostomy (breathing tube in her neck) and gastrostomy (feeding tube into stomach) before they will release her to come home. Then our next challenge begins. She will need 2 full time, round the clock caregivers with her at all times. This means I (her mom) can no longer work to financially support her and her older brother, and will lose our current health insurance. Dad lives in MN, and our plan was to move there and have her treated at the Mayo Clinic. However, doctors say she will not be stable enough to travel that far for a full year after her surgeries, and we have not yet found a medical flight that is willing to take her all the way there. So, we are stuck here for the foreseeable future with no income and a medically fragile baby girl who desperately wants to live and needs your support to help her do that. Thank you.
