Eva was born perfectly normal with a home birth but at 6 days old contracted a virulent form of meningitis leaving her profoundly disabled and totally dependent upon others.
Meningitis can leave a person with many long term problems and in some cases is fatal.
In Eva's case her brain had been squashed with the resulting increase of infection and fluid in the head.This in turn led to fitting which then also caused an heamorage.
Eva was unable to feed properly so had a nasogastric tube. Eva was also oxygen dependant and blind although we do think Eva could make out the colour yellow.To cap these severe medical problems off Eva had no body tone and could not hold her own body up due to lack of control. Fits where very frequent (and had caused eva's spine to twist badly) so Eva was on constant medication. Eva's brain was only just enough to sustain her most basic of functions.
A nervous tick gave the impression Eva was blowing a kiss. Eva was a 24 hour a day job and even though we where always tired and most times exhuasted she was worth every second she spent with us in her short life.

The Eva Heeks Trust was set up to provide Eva with all the things we thought she would need that in some cases should have been provided by Government Services (and often where not!) or where too expensive to buy out of a normal home budget (becuase we had to reduce the hours we worked and one of our jobs had to be given up we relied heavily on benefits that only just kept us alive let alone provide special needs toys and equipment)
We contacted Celebrities for items to either auction or use for fundraisers and managed not only to provide a sensory room but also a special pram to take her everywhere a family would go as well as a special bed.It would be fair to say the bill ran into many thousands which we could not have paid without the help of celebrities and the local community to whom we will be eternally endebted and owe our deepest of gratitude not only for helping funding equipment but also their freindship at a time we where at the lowest ebb of our lives.

With a disabled child we found that the system was set up for normal kids so we decided to fight it until it changed and implimented the changes that it insisted others where obligated to carry out. We realised our Government agencies and NHS just did not know how to support or put things in place at the right time to aid families with disabled children.
Since Eva passed away not only did we lobby Parliament with letters from parents our family has attended many meetings  and Forums locally and proud to say that things are now changing for the better and future systems will one day be in place to deal very effectively across agencies without gaps to fall through.
With Thanks to all the agencies and Parents who have contributed to this process to acheive what has been done and what is about to be done.

Most importantly to take a tragedy and use the experience for the good of other children like Eva and in doing so keeping the memory of our Angel alive as a testement to some and as a reminder to others.