Lily's Diet and Mobility Fund

Our daughter Lily is 5 1/2, a beautiful little girl and has Crouzon's Syndrome, this is a genetic cranio-facial condition, however it also comes with various other complications, two of which are that Lily has dysphagia that results in her being gastrostomy fed (fed through a tube into her stomach as she can't swallow solid food) and she also has a combination of a developmental delay and hypermobility in her ankles (that is she has over flexible ankles that means although she can walk she has some extra mobility difficulties).

This fund is raising for support for both these extra difficulties. Lily has a blended diet. This means we have to blend Lily's food. We usually use a hand blender and then sieve her food. This takes up a couple of hours in the day, on top of usual meal time preparation for the rest of the family. We have got through quite a few blenders and sieves in the last few years, not to mention arm ache. So we are raising for a quality blender to at least halve this time and effort.
Lily is also learning to ride a bike, but due to her hypermobility and weaker leg muscles she is having problems moving the pedals and balancing and she now needs help making the next step. There are specialist trikes she can have for children with her and similar difficulties so we are also raising for this at the same time. Like with all children the ability to ride a bike not only helps her overall bodily development but also improves her quality in life.

Thank you in advance for your support.