Evie-Anne cuts her long locks for love.

Evie-Anne’s locks of love. · 14 May 2018
Evie-Anne is 8 years old and has a very rare genetic condition called 1p36 deletion syndrome which leaves her registered blind, heart defects, epilepsy, severe dystonia, fully gastrostomy tube fed, non verbal & many many other conditions, way too many to list.
Evie-Anne is very happy, clever loving child, who lives an amazing quality of life for someone living with as many needs and conditions as she has, but she refuses to let that stop her.
Evie-Anne also has severe Scoliosis which is curvature of the spine, she has worn a full corset body brace 23 hours a day since she was 4 years old, unfortunatly it has not made any difference and the spinal curve has continued to increase rapidly, this causss Evie-Anne chronic pain and now the curvature is moving her major organs and needs correcting ASAP.
This year Evie-Anne will undergo a huge 12-15 hour surgery to have spinal magnetic growth rods to help straighten her spine, it is a huge very risky surgery for any person, but for a child with such complex needs as Evie-Anne is has many life threatening risks, unfortunatly if she doesn’t have the surgery the organs will move too much and start failing, so we have no choice but to go ahead with the surgery.
Strongbones charity are like a 2nd family to us, they have helped us purchase specialised expensive equipment that we could never afford to purchase ourselves, and helped us purchase items to enable fun and happiness in Evie-Anne’s complicated life, but most of all the support and love we get from the Strongbones community is amazing and so very important for families like ours.
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