Unfortunately, 7 years after their wedding, life took a turn for the unexpected in the form of a life threatening illness, and now their life is a daily fight for life, love and laughter that previously was a given.
In September 2005, just days before his 30th birthday, Aaron was diagnosed with Severe Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria (PNH).
Not just Aplastic Anemia, but SEVERE Aplastic Anemia.
If you have the immense pleasure of knowing Aaron, you would know that having a rare illness is one thing, but having a severe case of a rare illness isn't entirely surprising! Let me tell you, this man does nothing by halves! He’s had 2 failed immunosuppresive treatments, the 2nd of which they had to stop mid-treatment because it killed him...literally! He's had a bone marrow transplant, he’s been rushed to hospital more times than can be counted, and he's died quite a few of those times. To say Urshie and the boys are counting days is an understatement.
Aside from the physical, to know Aaron now and to know him pre-illness is not entirely different. Aaron & Ursh have a very unique view on life that translates to a warped, fantastic sense of humour, and an amazing resilience that keeps them both going, and keeps Aaron standing when he really just wants to fall down and give up!
Urshie describes Aaron as loyal, honest, super intelligent, positive, funny, cheeky (a lovable larrikin), a dedicated worker, and fiercely independent...I could add so much more to the list, but we musn't digress!
Aaron has always been very physically active, and that’s putting it mildly...let me just say:
Just ask...they'll tell you the story!
He was always willing to lend a hand to help someone move house, or go for a motorbike ride with his brother, or just go the extra mile to support his family and friends. That hasn’t changed, but his ability to physically help has, and that’s the biggest trial of all for him.
His boys have never known him as a physically active man, and his illness prevents him from being in any place with more than about 10 people at a time, so he can’t take them to the movies, or watch them perform when they’re in school plays or in a band, or sit at church with them and the rest of their local congregation (they have a private room at the back of the chapel). This means they spend a lot of time at home finding ways to amuse themselves as a family. Watching funny internet videos and playing board games together is just the tip of the ways-they-keep-themselves-amused iceberg, but what else can they do? To be with others is to risk a cold or a flu or a stomach bug that could be Aaron’s undoing.
Over the years of his illness, Aaron kept working even when the exhaustion was a little too much. In September last year (2016), it became too much, and Aaron was forced to retire from working his 2-day-a-week job. Physically he just couldn’t sustain the energy that was required to get him to the office and home again. His body has been slowly deteriorating for so long that sometimes he finds it hard to just stand. He can no longer walk up any kind of stairs. The simple act of stepping up onto the curb gives him so much pain in his back, knees and legs. Go back to Urshie’s description of Aaron as fiercely independent and you can imagine that he is feeling the heavy burden that comes from not being able to provide for his family in the traditional sense.
Finances have always been stretched - and Urshie is a wiz with money - but since Aaron’s forced retirement, things have been almost unbearable. The family have tightened their belts and cut corners to save, but still it doesn’t seem to be helping. To add fuel to the fire, some of Aaron’s necessary medications have been taken off the Pharmaceutical Benefits Scheme , meaning that they are no longer free and have been added to the ‘normal’ cost of living.
All the money we hope to raise with this campaign will go to towards helping them get ahead with their mortgage. It will hopefully give both of them some breathing space financially, so they can enjoy the coming years as quality family time, as there’s no guarantee on how long they have.
It will also give Aaron some relief from the guilt of not being able to provide for his family, and relief from the worry of what will happen to them when he's gone.
Nearly 12 years of fighting for life, love and laughter is a lot to document, and this has barely scratched the surface. You can read more about the beginning of Aaron’s journey on a blog that Ursula started back in the beginning of it all to help friends and family keep up to date on all of the developments with his health. It’s called Blood Bunny and Teddy (more of their twisted sense of humour!). Teddy is Aaron’s nickname for the love of his life.
Please donate as much or as little as you can, every bit really does help. Also, please share this campaign with all your family and friends, sharing this campaign is as important as the donations!
The James family is grateful for your willingness to help.
Thank you for your donation, it means the world.
Celebrating Aaron's 30th birthday in hospital
Some good times...
And some not so good times...
But always some crazy, fun times...
Crazy is hereditary in this family!
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