Keira's Quality Of Life.

Hi there,

Where to start, Keira was born 10/7/2015. It was noticed from birth that she was unable to suckle and swallow, she was then having several seizures and she was in neonatal for weeks and went home with a nasal gastric feeding tube. After a few weeks at home Keira was diagnosed with congenital glaucoma.

Many genetic tests were done and in March 2018 they gave us the diagnosis of FUT 8 CDG. The paper they gave us to read studied 4 known cases in the world with 3 of them passing away before the study was complete.

In April of this year she was in hospital with pneumonia and during a coughing episode a nurse put an oxygen mask on her causing a seizure which caused her to aspirate. She was ventilated and sent to ICU. From there she was flown to Starship Hospital in Auckland where she was for nearly 3 weeks.

Each and every day is a struggle with Keira having several seizures. The slightest breeze sets off seizures and no doctor has been able to pin point why. This has made it incredibly hard to live a full life and be able to spend valuable time with Keira out and about enjoying life to the fullest. Unfortunately her life expectancy is significantly shortened due to her diagnosis. We want her to have a pain and seizure free life and want to be able to take her out more even when it is windy.

My plea to you is to help Keira with the cost of her unsubsidised medication that will help reduce seizures and hopefully stop them completely one day . The cost of it is $490+ a fortnight and we can not do this without support of loving and caring family, friends and the wider community. Thank you for all the support. Big Kisses from KEIRA.