A angel named Jaylionna

On November18th 2005 my life changed when i gave birth to my daughter Jaylionna. They knew she was going to have some complications but didn't expect it to be this serious. They had to research to find out her diagnosis. They did a mri and found out that she has bilateral schizencpahly which is basically a cleft brain. When i was pregnant with her she had suffered from two strokes which caused her brain to stop growing. Her schizencpahly causes her to have scoliosis, cebreal palsy, epilepsy, snd she is blind. At first she was a normal baby... She looked at me, drank from a bottle, loved her pacifier ate baby food etc. But as she grew she couldn't do that anymore... She would throw up everything she ate she couldn't suck from a bottle i had to feed her formula from a syringe then they placed her on a feeding tube at 15months old. That day is one i wil never forget the doctor sat me down and told me from here on out i would have to constantly make decisions that could help save her life. They said the older she gets the voids on her brain would get bigger and she would forget how to do almost everything. They said she would eventually need a trach and ventilator and she would have another stroke. She won't live a full life if they had to guess she wouldn't make it past 10years old. My baby is now 9 and she's been through a lot more than i will ever experience in my lifetime... At the age of 5 her breathing got really bad and she had surgery for her trach and ventilator and went to pediactric specialty care so they can help ween her off of her ventilator. Well she was off of her vent for a couple of months and wr were planning on bringing her back home... But in December of 2014 she was unresponsive got rushed to the emergency room and had no pulse. They brought my baby back to life and then things just got worse they did a mri and found out she had another stroke. It damaged more of her brain they put a temporary drain in her head to drain the fluid off of her brain. So everything went ok... Then they wanted to do a shunt which they said would only prolong her life it wouldn't stop her from having another stroke and its only a 50% chance it would work for her. I made the most difficult decision in my life that most of you will hopefully god willing never have to make. I decided i just wanted my baby to have a good quality of life no more evasive surgeries no more her being in pain. So she was discharged but returned a couple days later with an infection which she got treated for. But now she is on hospice and still at pediactric specialty care which is an hour and 40minute drive. I want her back home to be with me and her siblings for the time she has left. I have to train for at least a week in trach care. I know how to take care of everything else she needs. She is the most amazing sweetest girl u will ever meet. She is my blessing she is my angel and she taught me soooo much. But her insurance may not cover nursing and hospice. I need help when she comes home because with me dropping my kids off and picking them up from school and just daily errands i need a nurse to be here with my daughter. I just really want my baby home she needs to be here with me. My heart literally aches not being able to see her, hold her, kiss her everyday. If you can find it in your heart to help me you would be the biggest blessing in our lives. Please, i really feel vulnerable asking for help but I'm desperate right now. I just want my baby home.




  • Mark Gamrat 
    • $100 
    • 75 mos
  • Sara Smith 
    • $50 
    • 75 mos
  • Nicholle F 
    • $50 
    • 75 mos
  • Anonymous 
    • $300 
    • 75 mos
  • Michelle McElhinney 
    • $50 
    • 75 mos
See all

Organizer

Jessica Bocsy 
Organizer
Pittsburgh, PA
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