Help Kiara get treatment in Auckland

My daughter Kiara is 18 mths old and has just been diagnosed with sonic hedgehog mutation, partial duplication of the 7th chromosome.

We were advised at the 20 week scan we would be best to terminate the pregnancy as her life expectancy was no more than a couple of months. We decided to take this chance and would rather have held our baby and had the chance to say goodbye than not to have any time with her at all. The day arrived when she decided to come into the world and she was born crying. I remember the last thing the midwife saying to me before she was born was “did you want us to resuscitate”. Well there was no need to answer that as she was born crying and very much alive. And even though we had a team of specialists in the delivery room she managed to spend her first night in the postnatal ward. She was born with part of her cerebellum on the outside of her head and had an operation to remove that at 25hrs old and then went and spent about 5 weeks in Nicu again astounding everyone with how much she fought. She pulled out her breathing tubes and came out of room 1 a day after her operation. She was doing amazingly. She then went back into surgery at 6 days old to have a shunt put in her head to drain the fluid into her tummy to stop her head from swelling. She will need more operations as she grows due to the length of the tube in place.

After this she went from strength to strength. We were told she would have breathing problems, feeding problems and she would probably never sit or walk unaided. So far we have managed to battle the breathing and feeding and she is doing great and no issues. (She loves her food!) She has also had two eye operations so the hospital becomes like a second home. Everyone that meets Kiara falls in love with her she is such a happy wee girl.

The issues we have is her mobility she is still unable to sit unaided or crawl. As her condition is so rare we do not know what the future will hold so we are planning on giving her every opportunity we can. We have been given the opportunity of a place on a programme doing the timmermans method which is a combination of different elements of intensive therapies with the Therasuit method as a key method which allows then create a more unique and tailored program for enhanced results.