"In the summer of 2002 we had a wonderful new addition to our family. Zak was delicious, chubby, breast-fed, 4-months old, and our first baby boy after three beautiful girls. However, my stomach felt in constant knots. I felt sick and I seemed completely unable to finish a single or simple job. Our life seemed in constant chaos.
"The specific reasons for this were that Misha, our eldest daughter was now unable to move independently, speak or swallow and was almost constantly fitting, due to a degenerative condition called Batten's disease. In February 2000 she had been diagnosed with this genetic illness that we were told would rob us of our beautiful, lively little girl within a few short years.
"Unfortunately, Natalie, our second daughter, now aged 3, was experiencing extreme frustration at no longer being able to walk and had large bruises on her face because she had refused to give up trying. She too had been diagnosed with Batten's.
"Ridiculously our little star, Sophie, aged 2 (clear of Batten's) had bounced into an 18-year old lad on a bouncy castle and had broken her leg!
"At this manic point in our lives Helen house remained alongside us. Supporting us medically and by giving us much needed respite breaks. We were all able to rest and play, supported as we really needed to be, feeling that we were loved and cared for.
"We were cared for as a family unit, enabling us to release for some short times the anxiety and pent-up emotions of managing our situation as a family. We came to feel that we could 'catch up with' our extended family in meeting other families in similar situations to ourselves. We no longer felt alone in our experiences.
"I don't know how we managed together as a family that summer, but I give much of the credit to the listening ears and practical support of this fantastic organisation."
One of the bedrooms in one of the four family flats at Helen House.
Very sadly Misha died on the 27th November 2002, aged 7 at Helen House. Natalie died on the 8th December 2003, aged 5 at home.
Their father, Peter, says: "Both of them stayed in the Little Room at Helen House from the time they died until their funerals, and the family was able to spend invaluable time with them, saying their good-byes."
