Avery-Beating Spina Bifida

http://spinabifidaassociation.org/what-is-sb/

‌Hello Everybody!!

My wife and I are trying to raise money for our beautiful little girl, Avery LeAnne Case who is due at the end of March 2018. She was diagnosed with Spina Bifida (meningomyelocele) in October of 2017, slightly after the 5 month mark. So our little story begins!

Through the first few months of pregnancy, my wife Susan and I were eager to go to her routine appointments at her OBGYN. Everything was looking picture perfect! Her tests were coming back beautiful, showing a strong, healthy baby girl. She had a strong little heart beat, all of her organs were present and functioning properly, and the pre-genetics test showed no sign of defects or illnesses. My wife and I couldn't have been more thrilled. Susan had been taking all of the necessary prenatal vitamins and was extremely cautious of what she ate. We had made sure we did everything possible to give this baby the healthiest life possible. Just over the 5 month mark in the pregnancy we went for another routine check-up. This time things were different. I remember the technician who was performing the ultrasound was acting a bit off when she looked at the lower half of our babies back. Nervously I asked "how did everything look?".. She replied that everything looked fine and that the doctor would speak to us shortly. We waited patiently in the patient room. When the doctor entered I immediately knew something was wrong. She showed us images of the ultrasound and what appeared to be a cyst on the lower part of my daughter's spine. She explained how our daughter had Spina Bifida; I'll never forget the feeling I got when she explained the defect to us. I couldn't help but tear up and my body went numb. My immediate thought was "how can this be happening to us; this isn't fair!"

The coming weeks were painful. Unaware of what this disability meant for our child and fear for her quality of life conquered our thoughts. We felt sorry for ourselves to say the least and felt sorry for our daughter more than anything. We went to UNC Chapel Hill Hospitals to meet with specialists in the field. Here we learned everything about this condition. Doctors explained what it could mean for her ability to walk, possible brain damage, and other complications that are associated with Spina Bifida.

After spending a day at the hospital running multiple tests, we received a hopeful prognosis! The neurologist explained that he believes she will not have any brain damage, he believes she will walk fairly normal and even run! Bladder problems are almost a given with any case of Spina Bifida, and there is a good chance that she will need to use catheters to use the restroom for her entire life. At any time after she is born, this prognosis can change. It could take a turn for the worst if excess spinal fluid makes its way to her brain cavity. I know God is watching over her; my wife and I have faith that her prognosis will not change and that she will live life to the fullest!

I want to point out the fact that I said I felt sorry for myself earlier in this post. I had a weak moment. I would never give up on Avery; not once did we mention terminating this pregnancy. This did not cross our minds. I am guilty though of not having faith in myself. I felt scared and wanted to place the blame on whatever I could, God, the doctors... I came to realize, I believe God gave us this child for a purpose. Defects and conditions are unfortunately a part of life, however, I believe God put this child in front of us because he knows my wife and I will do everything we can to give her a good life. I would die for this little girl.

It won't be an easy road. We will have weekly appointments with physical therapists and urologists along the way. Financially it will be tough, there's no hiding it. We already owe $5000 just in consultations and tests. Avery will need surgery within 24-48 hours of her birth to remove the cyst and fix the defect on her spine. We will be swamped in medical bills for the first few years of our daughters life. My wife and I both have good jobs, but in order to care for this child we will struggle along the way. Just over the holidays, we managed to save up $900 to put toward needs for the baby. Toys to help build her leg strength, medical out of pocket, and some other miscellaneous items my wife and I thought were cute for the baby :) Unfortunately at the very start of this new year I received a phone call that made our already tough situation even more tough. I received a call from a man saying he had my mom held hostage and if I did not pay him $1000 he would kill her. I don't want to go into extreme detail, but the man knew every detail about my family and I, and even had my phone bugged to where he could track my movements via GPS. For fear of my mother's life, I paid him $900; the money I had saved for Avery. This broke my wife and I hearts. I couldn't believe it. With the baby due in 2 and a half months I need to turn to others for any help we may get. I'm putting in extra hours at work and doing everything I can to make some extra money before she comes.

I don't feel right reaching out to others for money, but I need to put my pride to the side, because any help we get would be directly helping my little girl and that would mean the world to me. Should you decide to donate to our cause, please know you will never truly understand how great ful we are. I know everybody goes through struggles and for you to reach out and help us, I cannot put the feeling into words. It means the world to me.

Come the end of March, my life will change forever in the best way possible! I am excited beyond words to meet my little girl and I will do anything in the world for her. I will do physical therapy with her every day to get those little legs moving and who knows, maybe I'll get in shape too! We'll help each other, and that's what being a family is all about!!!

Thank you and God bless,

Josh Case
26815830_1515461916.9155_funddescription

Donations ()

  • JImmie & Dianne Austin 
    • $75 
    • 25 mos
  • Debbie Hazineh fiske 
    • $100 
    • 25 mos
  • Rita Murphy 
    • $25 
    • 25 mos
  • Phyllis Edmonds 
    • $60 
    • 25 mos
  • Kristee Day 
    • $50 
    • 26 mos
See all

Organizer

Josh Case 
Organizer
Charlotte, NC
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