Reason for this page is to help show support for my sister and her family with her long journey over the the past 10 years and the present
Manawatu / Whanganui
Hi everyone I'm Raewyn, aunty of these two gorgeous children.
My sister Sarah has 3 children oldest Malakai, Maia and youngest O'shay. And her partner of 17 years(I think) Steve.
Maia is a beautiful 13 year old girl who loves music.
She has NF1( Neruofibromatosis type 1) which caused optic nerve gliomas which has caused her to be totally blind( diagnosed around the age of 3). It was treated with chemotherapy but failed to help save her vision
She has also suffered absent seizures since a young age.
She has two brain tumors which she has had multiple surgeries and multiple rounds of chemotherapy over the last 10 years. She has a shunt in her brain to drain extra fluid from her brain also.
Maia also has a left side hemophlegia(paralysis of one side of the body) with the right side deteriorating over the last two weeks.
Maia has deteriorated over the last month and worsened over the last two weeks. Not being able to toilet herself. Her processing brain function is very slow. She hasn't ben eating or drinking. Sleeping all the time not wanting hugs which if you know maia she loves her hugs and food.
Shes been in Palmerston North hospital the last 4 days now she's going up to Starship hospital for more testing and surgery this week(9th August)
Even though maia has been through this her attitude towards life if admiring.
Now for O'shay hes a cheeky wee man who loves to play golf when he can and isn't in any pain from his back.
Hes 11 years old. He old has NF1(neurofibromatosis) which caused Scoliosis( curvature of the spine)
O'shay has been in and out of starship for 6 years with multiple surgeries on his spine.
Hes had growing rods inserted into his spine, which was unsuccessful twice.
He spent 3 months in starship in halo traction to stretch his spine by 10cm. Which he was also in isolation for the most part as he contacted the hospital superbug going around a the time.
He goes up again in a week for halo traction again and a spinal fusion.
So my sisters family will have two children up in Starship hospital but in different wards.
Funds will be spent on loss of wages, travel assistance, groceries, while both children are in starship.
And any other assistance they may need on their journey.
Maia after her surgery 18 August 2018
Maia had surgery on the 14th August to have an ICP monitor put in the brain to check pressure in the brain. After 48hrs of monitoring the pressure was normal. Drs did say it was low which isn't really normal but they don't tnink it's causing what's going on with her.
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