The Nathan Project for Rare Diseases | Interest
The Nathan Project for Rare Diseases
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24.01.2022 I am a shocker for updating on here atm. Short version: Nathan has spent the last month in agony with his back. After trying to manage it in the community setting for 3 weeks (with GPs and strong pain meds), Nath needed hospitalisation. He was admitted for a few days, given an IV drip and some strange butterfly thing in his tummy, stronger pain meds (hydromorphone) and he's now out of pain and back at home. I have revisited how it feels to be a full-time carer, physically ass...isting Nathan with each step he took to the bathroom, getting his pain meds, dressing, comforting. On top of that we moved house, and I did my PhD presentation. The highlight for me was having no money to get out of the hospital carpark, and having to contact family to literally bail me out. Man, I cried that night. I'm sharing this because THIS is the life that SO MANY CARERS LIVE. There's nothing unique about my circumstances. It's hell sometimes. What does excite me is my PhD topic. In the next few months we will be given the green light to start our research, which is measuring the effects of being a carer of a family members with rare diseases. This morning I created a list of support groups to contact about the study when the time comes. Seeing these diseases up close is truly confronting. Some rare diseases, such as Battens disease and muscular dystrophy, is devastating. I'll let you know more as it gets closer in case anyone wants to be involved. See more
16.01.2022 Some cool news! We just got word the role of support worker for Nathan has been filled! This was through St Judes and we are so happy! Nathan will have his own independence for the first time ever! This is 3 days a week. He’s currently too unwell to have a support worker though, so she is starting next week. Until then, Nath is in pain medication and resting up with his fractured rib, which is stopping him from walking, breathing on his bipap, and going to college. He’s just too sore. But aside from THAT, I reckon this is the best news he has had for a while! This is Nath today with his best mate Lannan. Don’t be fooled by Lannan’s charm, he was very naughty on his walk today and barked at everyone who dared cross his path. Schnauzers!!!
10.01.2022 Just letting y’all know Nathan’s back pain is a fractured rib. The guy is amazing, and taking it in his stride! Despite being in severe pain, he created a positive for himself from this latest hurdle. I took him to the shops and he bought 15 packets of Pokemon cards. This has made him happy! He’s bloody amazing.
09.01.2022 He aint heavy, he's my brother. This pic came up on my personal facebook today and I had to share. It illustrates everything we are working so hard for at the Nathan Project - caring not only for the patient but also their loved ones. I am pleased to let you know that the Nathan Project is the recipient of a $5k donation from an extremely kind and passionate donor. That money will be used to further this incredibly important research. In addition, the documentary also received incredibly generous funding from another sponsor to go towards post-production costs. I think great things are happening, which will give us the platform we need to make a difference in the lives of families doing it tough. There is so much to be grateful for. Thank you to those making this happen. It means the world. We are progressing.
01.01.2022 I knew I jinxed it yesterday when I said Nathan was doing well! A lot can change in 24 hours. Nath has been in excruciating back pain since last night. Today was filled with GP visits and an urgent CT scan. Long story short, it appears Nathan’s spinal rod is impinging with one of his ribs on the back. We are now seeking advice from his spinal surgeon in Melbourne. Nath wasn’t able to go to his college today. Instead he spent the day in pain. We are now both on the lounge ordering takeaway and chocolate. Life is just too hard today.
