New limestone carving measures 66 x 30 x 20 cm and weighs 20kgs Kindly donated by Barry Sim We are raising funds for Gendi (20 years old) who was diagnosed with Ehlers Danlos Syndrome (EDS) at the age of 8. EDS is a rare connective tissue disorder that leads to joint hypermobility/dislocation. Gendi’s condition over the last 5 years has severely deteriorated, leaving her in chronic pain through her spine and legs. This has led to days confined to wheelchairs following frequent joint dislocations, with severe nerve pain, shaking episodes, numbness, tingling, sporadic loss of vision, and she has required regular hospitalisation. Due to the rarity of the syndrome, her condition is not fully understood in NZ and NZ doctors were not able to help her. Gendi had to travel to the United States. The costs have been astronomical. It was a 5 hour operation that involved detaching and resetting her skull, fusing from her skull to her C2 with titanium hardware and a bone graft from her pelvis, as well as removing a piece of her skull. It was discovered during surgery that her vertebrae were so unstable and brainstem so badly compressed that there was no logical reason for her to still be alive. She had to learn how to talk, swallow and walk again. Her neurological problems began improving quickly after surgery! Recovery was going smoothly until 4 weeks’ post op when she began experiencing severe pain in her lower back that travelled all down her legs. She will need more spinal fusions and unfortunately she is one of the unlucky few that experience tethered cord which is a complication of EDS and the original surgery. This requires a second surgery, yet to be scheduled. It has been a wild ride over the past couple of months but so many positives have come from this surgery.