Parents are Carers to 4year old son with rare Batten’s disease
‘Our son won’t live past ten’: Parents become full-time carers for child blighted by fatal brain disease effecting 200 in UK
- Four-year-old unlikely to make it to his tenth birthday and unable to walk or talk
- Condition is so rare parents’ chance of meeting and conceiving him was one in two billion
Last updated at 3:18 PM on 9th November 2011
Distraught parents have told how their son is slowly being poisoned by his own brain.
Blighted by a fatal neurological disorder, four-year-old Morgan Mawson is unlikely to make it to his tenth birthday and is unable to walk or talk.
He is one of 200 children in the UK who have infantile Batten’s disease which is so rare his parents’ chance of meeting and conceiving him was only one in two billion.
Both Jenni, 28, and Eddie, 37, from Derby are carriers of the faulty gene which causes Batten’s disease – meaning any of their children have a one in four chance of inheriting the condition.
At birth there are no symptoms of the disorder so it was only when Morgan failed to develop properly that his parents realised there was something wrong.
Doctors told the devastated couple that he was not expected to reach his tenth birthday and that a deadly bodily poison was slowly destroying his brain.
Jenni said: ‘His brain produces a chemical which can be poisonous but Morgan is missing an enzyme which dissolves it – so that poison is killing off his brain.
‘It’s killing off his nerves in his arms, legs and mouth – it stops him from being able to chew and talking properly.
‘He can’t string a sentence together, only a couple of words. If you didn’t know him then you wouldn’t know what he’s saying.
‘His behaviour is regressing. At the moment he wants to throw things everywhere and he wants to put things in his mouth. It’s like we’ve gone back to the baby stage.’
Their son’s diagnosis was especially hard as exactly a year before their daughter Mia was found to have a rare brain tumour.
It was after Mia started complaining of excruciating headaches that medics discovered a craniopharyngioma – a benign tumour which grows on the pituitary gland – and she now has to have daily growth hormones and injections.
Jenni added: ‘We thought nothing could be worse after Mia’s diagnosis.
‘Then to be told your youngest child won’t live past ten – it’s a whole different category of emotion you fall into.
‘If we hadn’t have coped with what Mia had gone through, I don’t know how we would have coped a second time. We’re on auto-pilot all the time.’
Eddie and Jenni have had to quit their jobs to act as full time carers for their children.
Eddie said: ‘Our family life consists of travelling to hospital appointments, feeding and changing Morgan and sterilising things.
‘We can’t be flexible with our days any more – we’ve got appointment after appointment. If we want a day out, we have to tell people in advance.’
However the couple have said that the experience has brought the family closer together.
Eddie added: ‘People sometimes ask us how we cope and say they couldn’t be in our shoes. We just get on with our day-to-day thing.’
