Disabilities Are Superpowers

Sara Jackson used her creativity to teach her sons about being different.

- Sam Carl

Any mother will tell you seeing your child in pain is the worst torture you can endure. a scraped knee? You'd rather it was yours. a fever? You'd do anything you could to make them better. and, when it's something even more serious? You'd trade places with them in a second. If only it was that simple.

Back in 2006, I was already a mum to two-year-old Jacob, when I found out I was expecting again. My husband Daniel and I were so excited about adding to our family. But my second pregnancy felt different. I started losing fluid after my amniocentesis test and was sure something was wrong, but doctors assured me that everything was fine.

When Louis was born in September he was a quiet, sweet baby – a gorgeous mix of curls and smiles – and the worries of the pregnancy fell away.

Six weeks after he was born though, Louis caught a gastric bug that seemed to floor his immune system. After that, every cough or cold left him struggling to breathe and sometimes he would wheeze so loudly you could hear him in the next room. I lost count of the number of times we rushed him to A&E, terrified that he was seriously ill, only to be sent home after tests failed to show anything.

He started missing milestones and I implored doctors to work out what was wrong. Eventually, a respiratory consultant listened, investigated and finally found what I instinctively knew had been there.

On 4 June 2007 aged nine months, changed forever. He had 18p deletion syndrome. It was so rare the doctors who broke the news hadn’t seen another child like him.

The early years