Lily May has a rare genetic disorder called micro deletion 1q21.1 and she is one of only 865 in the world diagnosed (she is a denovo a new variant of the disorder in our family as we all have micro duplication 1q21.1) which causes her to suffer hyper-mobile joints which dislocate weekly, and she has chronic fatigue, global delay disorder, autism all of which she see's specialist for. Lily May has been offered a main stream place if we can replace a buggy with a wheelchair as a buggy will not allow her to be independent in the classroom. Lily May can do a lot of things which make people think she is OK but they see her for a short time not a full day, when she goes to school in September it will be full days which will not allow her the privilege of a three hour nap after a short burst of activity. So being able to use a wheelchair will allow her to rest and save energy at playtime on the journey too and from school and during the day when she is struggling. Lily May has limited language so will find telling teachers what is wrong but with her able to use a wheelchair she can with her limited language indicate she needs her wheels. Lily May also has a very high threshold for pain and as result she can really have hurt herself or have a dislocation and she will just get on as if nothing has happened. It is not unusual for her to dislocate a finger and just pop it back or her kneecap which she pushes back and walks on but that causes inflammation so having her wheels will mean she could avoid things like this in playground out of sight of adults. In her wheelchair she will be in a safe space.