Help Lily Come Home & Fight AFM!

I'm starting this campaign for my daughter Lily.  Lily has been in the PICU since March 23rd, 2017. That is the day our lives were turned upside down.

Lily was living her every day life as a spunky, intelligent,  athletic and very sweet little 8 year old girl. She loves math, gymnastics, and going to church together as a family. In one day everything changed. Lily had been at home for a little over a week recovering from a seemingly harmless cold and even seemed to be improving. My wife made an appointment with the pedi just to make sure she wasn't in need of any antibiotics. The morning of the appointment while my wife Amy was driving her to the hospital Lily's' neck went out. She could not even lift her head up in a matter of seconds. Terrified, my wife wheeled Lily up to her appointment. The doctor referred us to the emergency department and then we were directly admitted to the PICU. Right away the doctors had a suspicion of the diagnosis and only needed an MRI to start aggressive treatments. She underwent the MRI and it was decided to most likely be Acute Flaccid Myelitis. Otherwise known as AFM.

AFM is a polio like virus the attacks the central nervous system. AFM is super new and they are learning more about the virus all the time. There is no vaccines available, no known cure and prognosis is unknown.

In Lily's case she was paralyzed in the neck, upper arms and some of her trunk. She now has a consistently high blood pressure and heart rate. Her respiratory was also affected. At first she seemed to be doing okay with breathing but as time progressed her respiratory grew increasingly worse.  This was proven to be especially true after her may 1st admission to a nearby hospital for rehabilitation. After a couple of days of regular rehab days she fell into complete respiratory distress. She was admitted to the PICU once again and ultimately has to be intubated for two weeks. Once the two weeks were over and multiple unsuccessful attempts at weaning her off the ventilator to extubate it was decided that the best option for Lily would be to undergo a tracheostomy.

Today is a week after her surgery she is very emotional weaning off of sedation meds but is doing much better as far as her stability goes. She is looking to return to rehab sometime early next week. Lily wants desperately to come home to be with her family and her siblings! Since Lily has been admitted into the hospital I have had to take a small step away from my business in order to dedicate as much time as I can to helping my wife with Lily and Amy's parents with our other two younger children. Who also care for Amy's older brother who has profound disabilities and all his needs are provided for by them. Amy used to make all the meals, run the household as well as care for the children and her brother who is referred to as "Reuby". Everything has been so sacraficially taken up by her Parents who themselves are going through their own health struggles and older age.

Every donation will be gratefully accepted and will be used soley towards making our home in Sunnyvale, California wheel chair accessible, along with a bathroom renovation for a shower that Lily will be able to use, a van that will fit a wheel chair, Medical bills and a very productive two week trip to the Project Walk Headquarters in San Diego where we would be so grateful to participate in the "Train your Trainer Program" where Lily will get the full physical therapy experience along with private training for myself to have the best skill set possible to continue training and coaching my daughter for her own unique needs.


We will continue to use this page for updates. You can also find us on instagram and Facebook . Thank you so much for all your love and continued support. We hope to bring Lily home soon to a home that she can thrive in. 


Donations

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  • Luke and E.E. Lukowski 
    • $100 
    • 32 mos
  • Nidhi Surana  
    • $50 
    • 35 mos
  • Anonymous 
    • $50 
    • 37 mos
  • Bless You 
    • $20 
    • 37 mos
  • Anonymous 
    • $60 
    • 37 mos
See all

Organizer

Zacare Burris 
Organizer
Sunnyvale, CA
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