Hi, my name is Frances.
My youngest brother, Richard Tansey Craig (or Tan as we called him) was born just after my 13th birthday.
We were all so excited about having a younger brother. But my mother had a very difficult two-day labour and Tan was born with Down syndrome. Tan spent much of his first year of life in hospital, including for a frightening paralysis that lasted three months.
It was a shock for my family and rocked my mother’s confidence. After a year, I decided to come home from boarding school to help care for Tan.
We all pitched in to feed and bathe Tan every day and carry him up and down the steep steps to our house on a hill in Te Kuiti. We took him everywhere with us.
But when my siblings and I all flew the nest, Mum struggled to cope with the heavy workload on her own. She developed rheumatoid arthritis and was in constant pain.
Tan was four years old when dad contacted the Health Department and asked ‘what help is available?’ They suggested Kimberly Farm at Levin.
His care there was inconsistent. It broke mum’s heart to see Tan lose the small wins we had so celebrated – such as sitting up. Tan’s health continued to be frail and he died of pneumonia at the age of 30.
After Tan was born, other parents in our area came out of the woodwork to share their struggles of caring for disabled children hidden away at home.
They went on to form the King Country branch of IHC.
My Dad was a courageous advocate for children with intellectual disabilities and their parents. He helped raise funds for a dedicated school in our local area. A training academy and supported accommodation followed.
I’m including a gift in my Will to IHC in honour of my brother and dad, and all the other children with intellectual disabilities and their families who will need support into the future.
I hope my story inspires you to consider doing the same.