Codys Crusaders battling RARE

Cody was born healthy. Within a year and a half we found out Cody had Gauchers Disease type 1. We were thankful as although rare, there was treatment. Until Cody was 11 things were manageable. Yes we had numerous ER visits, constant illness due to low immunity, surgeries, tests  and a lengthy infusion biweekly. It was our life and we accepted it. Things changed drastically when Cody had his first seizure.  He began to lose his balance and fall constantly, he developed ataxia, tremor, myoclonus and untreatable seizures (tonic clonic) up to 13 in one day. Doctors saying it was Parkinsonism features. He also developed panic anxiety disorder. We were given the horrible news that he had Gauchers Disease type 3, a neurodegenerative Disease with no treatment. Even with this we lived everyday with hope. I stayed home as he needed support with all his daily living skills and was unable to walk . I reached out to doctors all over the world and I found doctors using a drug called Ambroxol which would be considered a chaperone drug and actually cross the blood brain Barrier. I worked to get this ordered as it is not available in Canada. It comes from Germany and it is $300 monthly.  We believe, with medical proof, we have slowed the disease from progressing. Although he was mostly bound to a wheelchair and continued to have all these ailments, he faced every day with courage and a smile. We had faith no matter how hard some days were. His humour strength perseverance and hope were inspirational to me and so many others. He is my hero. Our life was difficult and filled with uncertainty but we always remembered to laugh, love and Live. The real trouble started 6 months ago. We came into the hospital to do a wash out of medications as he has refractory epilepsy , Cody had a violent seizure (code blue) which caused a buckle fracture in his knee. The trauma from this has caused a ripple effect. His panic anxiety has taken over, he has endured 3 more breaks! The last one was his femur which  required emergency surgery, all caused by severe panic attacks some lasting 45 minutes and triggering seizures.  He has osteopenia in his bones and is fragile.  Since March we have been in the ACH 4 months. We need help getting home. To be discharged we need to have safety at home. We need a SCALAMOBIL the only medical stair climber available to be able to get him in and out of our home in his wheelchair . The machine is $10000, no insurance or funding available. We need to rent a lift and track system at $300 a month, we are always in need of other equipment (deductible for power wheelchair and seating) we need to continue importing AMBROXOL, we need to adapt our stairs in the garage to be able to get Cody out in the wheelchair. The financial strain has finally caught up to us. I receive no support from anywhere else and I NEED to get my sweet boy home.  We are also raising funds as we have been invited to the NIH to see
Dr Sidransky a world renowned research physician and
Dr  Goker-Alpan in Maryland who has the biggest number of type 3 patients in North America.They will see us but we need to pay for travel.  
PLEASE HELP GET CODY HOME AND FIGHT THIS HORRIBLE DISEASE
  • Ian Solnick 
    • $500 
    • 31 mos
  • Paul Nishikawa  
    • $50 
    • 34 mos
  • Cristina Iervella 
    • $20 
    • 35 mos
  • The Fortin Family 
    • $500 
    • 35 mos
  • Anonymous 
    • $20 
    • 35 mos
See all

Organizer

Anita Graham Judge 
Organizer
Calgary , AB
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