Jensen's Story

“We always feel welcomed like one of the family, even people who have never met Jensen know his name.”
Teething for two-year-old Jensen can make him seriously ill. Having a tooth come through or a simple cold can result in a seizure which may land him in hospital.

The toddler has Sturge Weber Syndrome and vascular malformation Klippel Trenaunay Syndrome which means he suffers from complex epilepsy, severe development delay and his limbs are different sizes. He also has a port wine stain on three quarters of his body. 

Mum Nicola explains what life is like for the family:  “Every cough and cold is a hospital admission. Every tooth can come through as seizure and we can end up in hospital. Any jump in weight can trigger it too. A few times he has almost had to be put in an induced coma.”

Recently they spent a month in hospital as Jensen was having cluster seizures.
The little boy is on three different medications and doesn’t really sleep. He is up between five and seven times a night.

The family enjoys coming to Demelza Kent on a Sunday to use the hydrotherapy pool together and have a break from looking after Jensen. They also come to Demelza for day care.

Nicola said: “We know that we are able to do things we don’t do at home. Everyone is so friendly. They take the time to spoil him thoroughly. Someone is spoiling him so we get to spend a bit of family time together. Nothing is too much trouble."

Could you make a difference for a child like Jensen? Find out how to donate to Demelza.