Brandon's Story

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Brandon has spent much of his life in hospital.

He is unable to breathe effectively for himself and uses a portable ventilator which is attached to a tracheostomy tube in his neck.

"He has spastic quadriplegic cerebral palsy, suffers from epilepsy and is fed through a tube in his tummy.  Despite all this he is the happiest boy you could ever meet!  This is what made the decision to become his ‘forever family’ an easy one.

What is not easy however, is all the dealings with medical professionals, and fighting to get him the care and the services he needs to make his life comfortable and fulfilled.  Unlike most families of medically complex children, who have grown up with their child and encountered the many difficulties gradually, we were straight in at the deep end dealing with everything at once.

We quickly learned that other parents were to be our biggest allies and sources of information and support.  This is what Charlie House gives us.  Through the charity we have met lots of other families who have been through similar experiences and we are able to share knowledge and advice.  It is great to spend time with other people who know exactly what we are going through and just get it!

The trip to Kielder was an amazing experience and we enjoyed activities we would never have dreamed was possible for a child with Brandon’s complications.  Who knew it was possible to get in a canoe with an invasively ventilated child?!  It has given us the confidence to dream big about where we can go and what we can do with Brandon next.

The sky is the limit!"