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.
This week we celebrate Keira's fourth birthday and we want to share some pictures for you guys to see how far we've come.
Keira is still on her medication thanks to the overwhelming amount of support from you guys and is thriving! Since being on the medication she has been more active and her seizures have become a lot more manageable and almost completely gone.
We have got to experience more then we thought we ever would. She has been to luma, a light event in queenstown which she loved and was great to see her react to the different lights. Also Keira has been able to go to see a crusaders rugby game (thanks to the crusaders who invited Keira along) and Keira was cheering the whole time.
The price of her medication also has decreased ($330) which means it's more of a reality that we will be able to continue to keep on giving her it and keep getting the most out of life.
We are looking into alternative ways of being able to fund her medication but have yet to be successful with any additional help.
We will also be getting a wheelchair for more adventures as she is getting so big and we will still want to be out and about making the most of life.
I want to thank everyone so much for the help we have received Keira and I truely appreciate it. This medication has done amazing things for us and Keira and I are able to enjoy life with a little financial stress gone.
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This page was created on 20 Dec 2018 and closes on 20 Dec 2019.