And this is our battle for Alex. Diagnosis
We noticed Alex wasn't making his milestones. Test after test in the midst of COVID when only one parent could go and receive bad news after worst news. It was discovered that Alex had brain damage (PVL) , 2 genetic deletions and sensory processing disorder. we were told that there was no case in the world like Alex . No doctor could tell us what his life would look like ....
The Journey
We were left numb, lost and utterly devastated. But like any parent , you put your own feelings to the and focus on your child. The disability services for children are so under resourced it's frightening. Alex can't talk or walk . but we believe that we need to give him every chance to achieve both . Alongside public supports, Alex privately for therapies to support him to achieve his potential , whilst also planning long term to adapt our home for Alex's long term care . Family
Dave and I have to work full time, we have all the same bills as everyone else to contend with, we have 2 other wonderful kids that adore their little brother and of course must continue to do their sport's , have their friends home and enjoy their childhood
Help
We like any other parent never expected to be in this situation . But after months of unknown and tears it is time for action. We need your support in anyway possible to give Alex the life and support that this one in a billion little boy deserves
My pray that one day science will catch up and give Alex the opportunity for gene therapy . But until then we have to live and support Alex in the present . We need to adapt our home for the special stander and buggy / possibly a wheelchair in the future .He getting very heavy to carry up and down the stairs and awake a lot during the night . So we plan to build a bedroom / sensory and wet room for Alexs needs/ dignity and development . But we cannot do it alone . So please help us to help Alex
