Let's send BRANDON to HAWAII!

My name is Nikki Randall and I am fundraising for my cousin, Brandon Keesing. 

Brandon is a thirteen year old kid who loves soccer,  playing computer games and hanging out with family and friends. As a baby, Brandon had a tough time. He spent a lot of time in hospital with lung infections and was in and out of intensive care. Brandon was eventually diagnosed with mitochondrial disease (a debilitating physical, developmental, and cognitive disability with symptoms including poor growth, loss of muscle coordination, muscle weakness and pain, organ failure and no cure). 

In 2013, thanks to revoluntionary technological advances in the capacity to read and understand genetic code, Brandon's original mitochondrial diagnosis was overturned!!!! YASSSS - you read right - diagnosis overturned!!! FYI - previously it would take weeks, even months, to analyse the code of a single gene but thanks to next generation sequencing, all 20,000 genes in the human body can now be analysed by a computer in one go. This meant the specialists at the Westmead Children's hospital were able to pin point the single defective gene in Brandon's body and provide a better more accurate diagnosis. 

Brandon's real diagnosis is Congenital Myasthenia, another genetic disease that, although incurable, is not fatal.

Brandon could walk when he was younger, but only very  short distances, until he basically became dependent on his wheelchair for quite a few years. But from 10 years to 13 years of age, and with the assistance of medication specifically for Congenital Myasthenia, Brandon has been walking, kicking the soccer ball and developing greater independence and confidence! 

Unfortunately, an intense symptom of congenital myasthenia is scoliosis (curvature of the spine). Brandon has 'S' curve scoliosis with top and bottom curves above 60 degrees.  Due to the worsening of his scoliosis, Brandon's lung function is slightly decreasing. All of these factors means that Brandon has to have spinal fusion surgery in November 2016. 

What the heck is spinal fusion surgery you ask?
Well, from what I can gather, hooks and screws are applied to his spine and then attached to long rods that  are used to the hold spine in place. Brandon's own bone, taken from his hip or cadaver bone, is also added inciting a reaction in which the bones in the spine begin fusing together. The fusion process usually takes 3-6 months and can continue for up to 12 months. 

Brandon will need to learn to walk again with intense physio and hydrotherapy sessions. The doctors are not able to guarantee if Brandon will maintain the level of independence he has today, only time will tell... 

So..........why am I telling you all of this? 


We don't know what is going to happen after the surgery, so wouldn't it be great if we could help this amazing boy, marvellous kid, joy of a human EXPERIENCE SOME KEWL SHIT WHILE HE IS STILL INDEPENDENT? 

We would like to raise enough money to send Brandon and his loving and supportive immediate family (Mum Kya, Dad Oli and two sisters, Tamika and Taylah) to HAWAII where he can hang 10, drive around in a convertable with the top down, maybe flirt with some beautiful ladies and take some time to experience his independence and his body. 

The thing I love most about Brandon is his compassionate nature, beautiful smile and his strength of character. Brandon never complains about his situation and always makes the most of every opportunity. 

Let's do something amazing for an incredibly special kid and let's suprise Brandon with a trip to Hawaii!

P.S. The ABC TV show, Australia Wide, ran a story on Brandon in October 2015. Check it out at 9mins in: 

P.P.S. For more reading on Congenital Myasthenic Syndrome, please go to: http://www.musculardystrophyuk.org/app/uploads/2015/02/Congenital-myasthenic-syndrome-CMS.pdf

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Nikki Randall 
Canberra ACT
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