Help Julie’s long recovery from a rare illness
- $197.00 donated
- 4 generous donors
Struck down by a life-threatening rare disease - help connect Julie to the outside world during her recovery.
After a career spent helping others as a teacher’s aide for children with special needs, Julie is now in need of your help.
Julie attended her Mother’s funeral two days before being struck with a life-threatening allergic reaction where her tongue and throat were so swollen she struggled to talk or swallow, her eyes were blood red and she could not walk or eat.
She was diagnosed with Stevens-Johnson syndrome (SJS), a rare and potentially fatal skin reaction marked by loss of skin and mucous linings. Julie has a long and challenging journey ahead of her - SJS can have long term complications and the disease can reoccur or trigger other auto immune conditions. She is left feeling isolated on her intense journey of unknown challenges towards a hopeful recovery.
Julie is 63-years-old and she now lives alone, after losing her husband at age 31. She has no computer and is unable to connect with others with the same disease, plus access research, treatment and emotional support through the internet and Facebook.
Her family have serious health challenges of their own with a beautiful grandson, Lorenzo, born prematurely at 31 weeks and her daughter (Lorenzo’s Mother) needing a kidney transplant due to Stage 4 kidney disease.
NZORD has set this page up on behalf of Julie to fundraise for a computer to make sure she is no longer isolated. 100% of the money raised will go towards buying a computer for Julie and helping her connect to the internet. NZORD works to connect people with rare disorders to information and support, and was motivated to help Julie after her ongoing battle with SJS was reported in The Press.
Please help by donating what you can so Julie can get a computer and be connected to support networks and information during her long road to recovery.
NZORD has set this page up on behalf of Julie to fundraise for a computer to make sure she is no longer isolated. 100% of the money raised will go towards buying a computer for Julie and helping her connect to the internet.
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NZORD helps people affected by rare disorders and their families to find essential information and provides resources and information for rare disease support groups.
As well as monitoring rare disease issues and policy matters and building partnerships between patients/families, support groups, clinicians, researchers, policy-makers and industry.
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