Hi, my name is Janae. I am a mother of two beautiful children. My daughter Nahla was born with a rare genetic condition called Lethal Congenital Contracture Syndrome.

This condition caused her to be born with what is called Arthrogryposis. She has poor muscle tone and has several complications due to it as she cannot support her own head - she feeds through a g-tube, uses oxygen therapy regularly (on BiLevel machine at night and when sick), and she experiences seizures as well.

She had spent her first 10 months of life in the NICU, PICU & children’s hospital. She has a strong heart and has overcome several health challenges - she’s had 2 surgeries and had to be intubated 4 times. She is now at home using several medical supplies and has several specialists but she is so strong and has a sweet personality!

Unfortunately, we have been faced with several financial burdens along the way. We lived in a small rural community so we had to stay in a hotel while Nahla was first in the NICU. When we learned of her diagnosis and challenges that would come with it, we decided to relocate for her needs after 5 months of staying in a hotel. During the hotel stay, relocating and leaving our jobs back home, we accumulated a lot of credit card and loan debt. We thought we would eventually pay it off but unfortunately Nahla requires around the clock care at home and I have to leave work when she’s sick or in the hospital again so we are barely getting by. Additionally, Nahla’s medical equipment comes at a cost and our utilities more than doubled since having the equipment always plugged in and needing frequent washing…

We love our kids and it breaks our heart that we’re struggling to provide for them. Any and all donations are appreciated.