I never thought I would launch a go fund me campaign once, let alone twice in my lifetime. I believe my children are my responsibility, however, little did I know that I would be given the gift of Josh. My handful, my argumentative boy but also my miracle. Josh’s first year was fraught with difficulties as we battled to keep him alive. As he grew everyone fell in love with him regardless of his medical problems.
You see Josh was born with a malformation of the blood vessels of his brain called a Vein of Galen Malformation (VGM). The Vein of Galen consists of abnormal connections between the arteries (carries blood to the body) and deep draining veins, (returns blood to the heart) and lacks capillaries to slow the blood flow between arteries and veins. Without capillaries, blood is shunted directly into the vein at high output. This, in turn, increases the workload of the heart, left untreated this often results in abnormal brain development, brain damage, strokes, seizures, paralysis, learning difficulties, hydrocephalus and ultimately cardiac failure and death.
In 2010 we could see Josh was deteriorating, although it was subtle at first. His walking wasn’t as smooth, his speech wasn’t as clear and his memory was fading. After 18months doctors have now tried to stabilise him and halt the deterioration but nothing is working. His specialists believe that the blood vessels in his brain are becoming tired and are struggling to keep up with the abnormal flow within his brain. He now seems to be suffering from Vascular dementia and we suspect he is having small silent strokes which is heartbreaking.
His deteriorating mental and physical state is fast-tracking his dementia, impeding his ability to live the life he desires. He has a beautiful companion in Jessie, our incredible assistance dog who helps us no end to settle Josh, keeps him from getting lost and reduces his need to be constantly soothed by us - but this isn’t enough.
He is still struggling each day. Josh battles not to become agitated and angry at requests or events at home. He becomes angry and often hits and yells. Josh screams when I ask him to come for dinner if I offer him a glass of water he yells “stop telling me what to do”, if I ask him to get dress he says “I’ll take you down if you don’t stop bossing me around”. Everything we say challenges him in a way that makes him so frustrated and unhappy. I am heartbroken watching my boy struggle to maintain happiness and even have small joys in his day. My greatest wish for Josh is happiness, even if I have to concede that Josh does have a limited lifespan, I wish with everything in my heart he has happiness in those years.
After many investigations and many consultations, we believe our best bet is to get Josh to Florida to the Institute of Neurological Recovery. The Institute of neurological recovery is investigating the use of a comparatively new drug called Etanercept, developed for inflammatory diseases such as arthritis, and now effective and mainstream in those areas. Etanercept targets a protein called tumour necrosis factor, which clusters around damaged areas of the brain and in excess can stop cell regrowth, it is now being used in America for stroke victims.
Etanercept is a large molecule and it cannot pass the blood-brain barrier – the natural defensive system around the brain – if it is injected normally. However, a Florida-based doctor, Ed Tobinick, discovered that if it was inserted into a cluster of veins around the top of the spine, and the patient is gently tilted upside down for a few minutes, gravity can take it into the brain. This is then hoped to remove the inflammation caused by the stroke and enable Josh to function far better than he is. There’s absolutely no guarantee this will work but as a parent its worth trying.
If I can do something as simple as improving the time Josh has left then, as a parent, I feel I have done my best. There is nothing else we can do for Josh so all our efforts are now going into this for him and hoping against all hope it works for him. Each injection costs a massive US$7,500, he will need two injections over a two week period and in 6 months he will need two more “if” it works so the costs will be high, we are starting the funding at $30k and we will go from there this will cover the first two injections and get him to the US and hopefully we will be able to raise more if we need it down the track. For now just the opportunity to give Josh some relief and quality of life would be the greatest gift we could imagine.
We are not sure how long we will have our beautiful boy but are determined that his life will be what he wants it to be. Vascular dementia can take individuals as quick as five years from diagnoses but Josh is already defying those odds, he is not following the regular trajectory after all he is a 21year old with dementia that’s not normal for this condition for a start. Doctors are now estimating that Josh has approx 10 years left with us but are not sure how many good years he has. We want every one of those years to be as happy and fulfilling as possible for our boy and our family.
Special thanks to Karen Alsop from Story Art for her never ending support from her heart xx
All our love Mette, Jason, Josh, Rylee, Cooper and of course Jess xxx