Gendi Roberts Life saving Surgery $100,000

Gendi is a beautiful, intelligent girl with a remarkable sunny disposition given everything she has been through.

At age 8 she was diagnosed with EDS, after she lost her hair literally overnight, leaving her bald. - EDS is a rare connective tissue disorder that leads to joint hyper mobility /dislocation/paralysis and is caused by a defect with collagen which is an important contributor to the physical strength of all tissue in the body. - If left untreated this condition is life threatening.

Over the last 5 years her condition has severely deteriorated, leaving her in chronic pain through her spine and legs in particular ; - leading to days confined to wheelchairs following frequent joint dislocations, with severe nerve pain, shaking episodes, numbness, tingling, sporadic loss of vision/hearing, and requiring regular hospitalisation.

Due to the rarity of the syndrome, her condition is not fully understood here in NZ and doctors here are no longer able to help her.

Fund raising efforts so far have meant Gendi could travel to the USA for investigations and doctors there have now agreed to undertaken life saving craniospinal surgery - planned for Thursday 12 January 2017.

This surgery involves a craniospinal fusion, suboccipital decompression and reduction, bone marrow harvest, and occipital C1-C2 fusion and stabilisation.

Surgery costs are upward of $100,000. - a huge cost for any family to bare.

Gendi cannot keep living in her current state without continuing to deteriorate, as complications become more debilitating with paralysis more than likely without surgery. There is no mistaking - whilst Gendi appears completely "normal" on the outside, her condition is life threatening.

Gendi would like to pass on her sincere gratitude for the help to date"

" There are no words to thank everyone who has helped me get this far and we are so incredibly grateful;".

Please help us help this amazing young lady.