Meet Hannah from the United Kingdom.
Her mother, Jacqueline, shares their diagnostic journey in searching for answers for her daughter’s symptoms and drawing on Hannah’s contagious smiles as a source of strength.
By: Jacqueline Law, United Kingdom
Hannah is our second born. Pregnancy and labour were fine. She was born at approximately 37+ weeks, or 3 weeks early.
Her first problems came when she ended up in hospital for 3 weeks due to getting bronchiolitis at 4 months, which lasted through her first Christmas and New Year. As one can imagine, it was a hard time for us with also having a 2-year-old at home too. However, we were able to lean on family, who was able to help.
Then, when Hannah was 10 months, she ended up in and out of hospital due to catching chicken pox. It covered her whole body and made her stop eating, which she then lost weight.
Through it all, she still managed to give us smiles.
At 4 years, she was diagnosed with Global Development Delay and was kept back a year at nursery.
Just a couple of years ago, we found out she has a duplication and deletion on one of her X chromosomes, which apparently was inherited from me. Then, in February 2021, Hannah was diagnosed with Wiedemann-Steiner Syndrome at 11 years old.
It was a shock, but also a relief to get some answers.
We are still on a long journey with her. Some days are harder than others, but I’m glad to have the WSS online group for a place for answers as I’m still learning more about the syndrome.
Today, Hannah loves cuddles and dancing around the house. She also loves being on her phone texting or watching videos or playing games. She also loves caring for our two hamsters and guinea pig.
She’s still giving us smiles!