I have created this page to enable #teambrennagh to access specialized medical expertise from the USA. She is beyond medical help in NZ.
Manawatu / Whanganui
Brennagh McKay is my 11 year old daughter. Brennagh was born 3 months premature with Full Trisomy 18.
After living 7 years with a terminal condition Brennagh had a life threatening medical event where she lost over 3/4s of her bowel and wasn't expected to live. After a 6 month hospital stay Brennagh was well enough to return home and enjoy a full life.
Brennagh was enjoying time with 4 of her 5 brothers, going to school and just being a regular little girl enjoying her life.
5 months ago Brennagh's remaining bowel began to shut down. Sometimes long term tube feeding with short gut syndrome can do this.
This is when we discovered the prescribed tube foods were no longer compatible with Brennagh's digestive system and that she has no more medical options available. They don't exist. Waiting to die a slow death at home is not something we want to be doing however in reality this is what is happening. In 5 months we've almost lost the physical girl we knew.
And she is also the only medical case our medical team could find in the world.
My daughter is dying from malnutrition and we need help.
Many mums from around NZ have and still are donating breastmilk which is a temporary measure sustaining her life.
We are so thankful.
Other mums are trying to help us create a suitable diet/formula to put on weight. Difficult to do with a short gut patient. It's a very complex medical field.
We need financial assistance to access specialized medical expertise in the United States from people confident enough to work with us. My daughter is slowly fading away and she has no idea she is dying. It is the most awful thing a parent can endure and I can't give up on her when a child shouldn't die from starvation in New Zealand.
Brennagh's zest for life is still very apparent to all her friends, family and community. She is so loved by us all and has beaten death so many times in her short years. She surprises everyone with her incredible will to live.
Our new discoveries in this field could help many other children in the future.
Thank you for reading our story.
Kathleen McKay
To access medical help which isn't available in NZ. We also wish to create a calorie dense low volume formula for tube fed children which currently doesn't exist. There is no previous medical science documented in this area.
Much research is needed.
Sadly Brennagh Lost a Brave Fight 18 May 2018
My apologies for not being here sooner. Let me first thank you all so very much from the bottom of my heart on behalf of Brennagh, myself, my husband and our family. Your support allowed us to go above and beyond our system for a brief time and we are eternally grateful.
We are griefstricken beyond words to have to inform everyone Brennagh lost her battle with malnutrition on the 17th of March, her brother's birthday, another blow.
Equally sad is it is something that should never have happened to a child in New Zealand.
We have no time to grieve Brennagh's death as reality after the lost of your child hits pretty quickly and your life, your world and your job vanishes in an instant. One must pull it together and quickly. At 52 and having been a fulltime mum most of my life one could say my life has been completely ripped inside out and I am back in the job market. Interesting times ahead.
Brennagh was my world 24/7 and I am still blessed to have all of her brothers. So as much as I would like to just break down and cry for my only daughter and take some time, I can't. Too many things need doing and being busy is probably a good thing.
I miss Brennagh more than words can say.
Thank you all so much.
RIP ANGEL 20/06/2006-17/03/2018
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