My name is Kerri-Ann and I am mum to Charlotte. Charlotte is a happy and lively child. Although very happy now, she has had a big struggle! We were told at our 20 week scan that there was signs of a brain development issue. The news was devastating. But after lots of extra tests and scans, our gorgeous girl was born on New Year's Day. We were then told she was perfectly fine and to enjoy our new baby. But Charlotte began to struggle to meet all the normal milestones, and we were back for more tests. When she was 9 months, she began to have severe seizures, these were horrifying to watch and again devastaed us all. At 15 months, she was diagnosed with 1P36 chromosome deletion syndrome, a rare genetic disorder in which there is no cure. We were told that she wouldn't walk or talk, that she would have severe learning difficulties and would always need care. We were given a lot of medical advice and support, but again devastated at what the future would or wouldn't hold for our girl.
Charlotte's paediatrician suggested that we contacted Zoë's Place for some help. I was very distressed at this thought, but agreed to look around and talk to the staff. I was amazed at how friendly and happy everyone was. The babies were all happily playing, the staff were so supportive and understanding, they put any concerns I had to the back of my mind. I was upset at being in the situation that we had found ourselves in, but the initial understanding and on-going support from all the staff at Zoë's Place has made us a happy family again.
Charlotte loves going in for her little "holidays" and the staff have made a massive effort to include her older sister Eleanor. Eleanor attends their sibling days with all of the other siblings of the Zoë's Place babies, and she loves going in to see the staff at the hospice when we take Charlotte in. Having Zoë's Place available to us has meant we can have some much needed sleep, but most importantly has meant we can spend time with Eleanor, doing things that she needs to do, without having to come home early, or stop activities to give Charlotte medicines or meet her other, sometimes complicated, needs.
I cannot thank the team at Zoë's Place enough for giving us this time. Knowing your child has very complicated needs is always at the front of any parents thoughts, but knowing she is somewhere where she is so well looked after and loved, means we can give her older sister the time she needs with her parents, without worrying about Charlotte's care.
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