Luis was born with a chromosome 1p36 deletion (Google it).
For luis this means he spent the first years in and out of hospital, He has holes in heart, he eats like a horse but unfortunately for him its not enough so he has a gastrostomy (tube in his tummy to feed him). Luis has gastric reflux too, with other bits and bobs.
Developmentally luis now 7 and a half he can bum shuffle like lightning, stand with support for a few minutes if you are good a distraction )).
Luis really struggles with communication most he understands far more than youd think but he is more or less non-verbal so we get lots of behaviour problems.
uis loves outdoors best but unfortunately its not inexpensive or always practical. So we are looking into getting him a specialist bike (1500) a specialally made swing (1000) a covered soft play area for the garden too.
Its ridiculous the amount of money these things cost, a typical child could get this stuff for 100 pound so why not luis
Im also hoping to organise a fundraising event in the summer
Fonate a penny or a pound or two even anonymous if you don't wish the world to know.
Thank you very much let luis have a fun filled life )