Susie Elliott writes .......

 

Plans were underway for an extension to our house to bring our daughter Katie downstairs enabling her to have her own bedroom and wet room.  Due to this I decided we needed some financial help towards this refurbishment.  I applied to go on a BBC programme called ‘CASH IN THE ATTIC.’

 

Filming was done over 3 days; the first day being at our home.  There was huge excitement as the house filled up with camera crews, sound engineers, director and producer; as well as the antique personality and female presenter.  Katie was in food heaven as she was in the kitchen with the caterer ‘Gus’ and happily pointed to anything she fancied!  The tv crew were lovely and we had such fun with them; they put us totally at ease and we felt quite relaxed in front of the cameras.

 

The auction day followed on a few weeks later with family and friends joining us. Unfortunately we didn’t raise as much money as we hoped due to the fact that we couldn’t bare to part with our favourite items.  We made just under 500 pounds, which was a start for helping kit out Katie’s new bedroom and wet room, but not quite enough.

However a few days later  I received a call from the Director of the programme who told us that due to not making our target amount wanted to see if they could help us in some way towards the build.  Because of Katie’s condition they volunteered to ring some of the companies and see if they could obtain any items free for us.  Well to our amazement a company called ‘GEBERIT’ agreed to donate a Balena shower toilet worth approx two and a half thousand pounds free – what a result!!

 

Our last days filming showed us with our family clearing out our garage ready for the start of the build and ‘clapping in’ the arrival of the toilet which had been duly delivered.

 

The programme was shown in February 2009.  Family, friends and colleagues were told and we waited in anticipation.  We were delighted at the result; there was plenty of coverage of Katie and her condition Niemann-Pick and the whole programme was sympathetically done.

 

Our extension starts end of March and we can’t wait for Katie to have her new bedroom and wet room.

 

The last year has been very difficult with Katie’s mobility getting worse and her speech reduced to no more than a few words.  Nights are exhausting as she is restless and wakes frequently through the night.  Mealtimes Katie chokes frequently and has difficulty feeding herself; we have to be careful what foods we give her and the consistency.

 

Life is not easy living with an adult with Niemann-Pick (type c).  We feel fortunate that Katie has a late onset of the condition and so family life was not really affected in her early years.  Once she reached 18 the neurological problems began to appear.  From being relatively independent, going to college on the bus, having a boyfriend, going shopping; Katie began to be a danger to herself, forgetting things, missing her stops, falling over.

 

Katie will be 26 this year and I, her mother, now have the role of full time carer with the help of  my husband John and my other two children Mike and Jenny.  We are a tight little unit and we get through it with tears and laughter and a determination to enjoy life to the full.

 

I have battled to get the help that we need for Katie’s care and gradually we are getting there.  But we still feel there is not enough respite help provided.  It is so important to have time out to recharge your batteries and for Katie as well to have holidays with other young people.  It is so wrong that we families with disabled children have to beg for any offer of help and negotiate the minefield of bureaucracy.

 

Never ones to be beaten the Elliott family are determined to highlight the distressing condition of Niemann-Pick.

 

We will be fundraising this Spring/Summer undertaking a 5k and 10k run – watch this space!

 

 

Susie Elliott