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Our Story - Written by Tracey Huggins #PartFour

23 February 2021

All of a sudden we were in hospitals more than home, talking life expectancies and the next test they could run. We have had blood sent to drs all over the world, we’ve spent time in Great Ormond St hospital and almost 9 years on we are literally no further forward to an answer.

All we know to date is Delilah has ichthyosis, delayed myelination, nystagmus, global developmental delay, autism, Sjogren Larsson-like syndrome and a movement disorder that we are still figuring out. Delilah has had x amount of surgeries, exploratory surgery and two lots of hip dysplasia surgeries and will be having more surgery in the future... and yet she’s no bother with it all (at the moment that is!) The hospital trips weren’t easy on our family.
My husband had to leave a job he loved, with people he had spent years working with and our finances took a hit. It all took it toll, not just on Delilah, my husband or myself, but the greater impact it had on my relatively young children at the time. They didn’t understand where we were all the time and why they couldn’t come with us. They spent time with family, and our precious Labrador had to go to a new home. Surprisingly not great to leave a Labrador at home by himself much as we discovered one day when Marley had ripped our toilet system off the wall! We came home to a wonderful swimming pool! The impact of becoming a parent carer to a child with any additional need send ripples across your home life and no one prepares you for it. 
 
Welcome to the wonderfully special club, that no one asks to be in.
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