Keira's Quality Of Life.
Keira is a cheeky 3 yr old who has several seizures every day. Please help us fundraise to cover unsubsidised medicine.Southland
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.
Sascha Abey's involvement (page creator)
Keira is my daughter who we are fundraising money for to go towards the cost of a consult and medical treatment to give her a better quality of life.
Use of funds
All funds will go towards unsubsidised medication to reduce or stop seizures. Any other money will be put towards funeral costs when the time comes.
Just wanted to let everyone know that miss Keira has been doing well thanks to your on going support she has only had two lots of seizures in 6 weeks so thanks to her medication this has increased her quality of life and is so happy and cheeky. We will be having more procedures in the next month to help with her eye pressure but other than that she is doing well. Thanks so much again for everyone's support.
Love from Keira and sascha
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This page was created on 20 Dec 2018 and closed on 20 Mar 2020.