FASHION

Down Right Beautiful

Down Syndrome

Holly Lisk

My name is Holly and I have Down syndrome

Hi, my name is Holly and I am 2 and a half years old. Here is a little about my story. When my Mummy was 12 weeks pregnant, she had her scan which showed the Nuchal Fold on my neck was larger than normal, this was an indicator of Down syndrome.  At 16 weeks she had another screening, which was non invasive but more accurate and was told that the chance of me having Down syndrome was 99%. My Mummy was a little upset at first and cried after that phone call, but Daddy hugged her and said it would be OK and they would love me know matter what. So Mummy and Daddy got used to the fact they would have a child with special needs, but then at her 20 week scan, it showed I had enlarged brain ventricles. Google then became mummies worst enemy and she read some really scary stories on there.

And then I was born

She had lots of extra scans, each time would show that my brain ventricles were getting more enlarged. The Obstetrician seemed quite negative, using words like 'If the baby survives', 'Hydrocephalus', and 'brain surgery'. This absolutely terrified my parents and the rest of the pregnancy was one big worry, that mummy wasn't able to enjoy. She was offered an MRI on Christmas Eve, which meant traveling far away. She had 3 other children to think of, so declined. What would be would be and nothing would change now. A scan at 37 weeks showed that I hadn't grown since the last one at 35 weeks, so it was time to induce my mummy. After a quick labour, I arrived in to the world weighing a tiny 4lb 12oz. I stayed with my mummy for the first night, but the next day I was looking quite yellow, so went down on to ICU for phototherapy as I had Jaundice. I also had a heart scan which shockingly showed I had 3 holes in my heart, one of these (VSD) was quite large. An ultrasound on my brain revealed that my ventricles weren't quite as large as what the doctors had thought and nobody seemed to be worried about it anymore.

Nothing Down About Down syndrome

After 11 days, I was able to go home, where our house filled with so much love, I have 2 older sisters and a brother, whom I adore and they also think the world of me. They see past my Down syndrome and just see me as Holly, who gives the biggest hugs and most infectious smiles. At 5 and a half months old, after routine heart scans showed no closure to my VSD, I had open heart surgery, which I sailed through. At 6 months I had an MRI on my brain which showed I was missing a chunk of my Corpus Callosum. These are very fine fibers which run between the left and right side of my brain. My mummy says, you wouldn't think anything was missing and I am doing quite well. I started walking at 19 months. I am delayed in my speech, but slowly I am learning new words and I can pick things up very quickly. I love to climb, everywhere! This really has given my mummy grey hairs, and she often finds me stood on the kitchen table. I go to nursery and love playing with my friends there. I like going to the park and playing on the swings and slides. It takes us forever to go around the supermarket as I am always waving at people and they stop so I can give them one of my infectious smiles. Last year I signed up to Zebedee, a modeling agency for people with disabilities. I did a shoot for a well known High Street shop, here in the UK. I would love to do more in the future. I want to show you all, there is Nothing Down About Down syndrome.

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