Support Amaya's Spinal Cord Surgery

Hello everyone!

My name is Jaylynn and my daughter Amaya was born without legs and external ears. She is hard of hearing and wears a hearing aid. She was also born with small facial bones caused by Pierre Robin Syndrome, cleft palate, a g-tube, she has abnormalities in her forearms called Bilateral Radial Head Dislocation, a tethered spinal cord, small kidneys, the list goes on. She is in therapy 4x a week that includes physical, occupational, speech, and feeding therapy. She has had 8 surgeries including 2 on her jaw and an amputation. Amaya shows us how strong she is every day with her increased mobility and range of motion.

I am creating this GoFundMe to help Dad and I with her upcoming spinal cord surgery. Normally, your spinal cord flows freely in the spinal canal, but Amaya’s cord is attached to the spinal canal by fatty tissue. Since she was born with no legs, it hasn’t caused much issue for us but can definitely create dysfunction with bowel and bladder movements. As she grows, the spinal cord stretches and it shouldn’t. It should be growing with her body. So, to eliminate any anticipated problem, we are going to have surgery to release it.

The main issue with going to surgery is Amaya is impossible to get an IV in. The last surgery we had to repair her cleft, they had to stick her 15 times. When we were in the NICU, they had to sedate her to get central access, which is more intense and difficult to get than an IV. Needless to say, it takes a lot of patience to take Amaya to surgery. We are praying everything goes well and hopefully this will be the last surgery she needs!

We have been asked if we have a place you can give. Nothing is expected but everything is appreciated! We are so grateful for your support online and your continuous thoughts and prayers along the way! <3