We are absolutely delighted to announce that the hilarious Urzila Carlson is coming all the way to Timaru to put on a show for Nina. Tickets are $30 and 100% of the ticket sales goes directly to getting Nina her surgery. Come along for a great night out, there will also be some live music and a charity Auction.
Hi everyone, I have just popped up a few photos from a couple of our fundraisers that we have done. We did a car wash and sausage sizzle which we made $162 from, and Nina's Pre-School organised and ran a variety night for her. We should have the total raised from that in the next couple of days. I am overwhelmed with the support we are receiving, it is so truly heart warming xx
On the 26th of June we will be doing a sausage sizzle at the town and country rugby day at alpine stadium. Come along and grab a sausage, cookie, drink or just come and say hi, we look forward to seeing you all and putting some warmth in your bellys on a cold day :)
After the news paper article went out and our fundraising began, I was contacted by parents and professionals. After a lot of discussion we have decided that it is best for us to change treatment plans. This means we need to change the operation Nina is having. A long time ago I found out about a procedure called Selective Dorsal Rhizotomy (SDR), I spent a long time looking into it and applied to one of the leading pioneers of the operation to see if Nina is a candidate. She is. During the 3 month long application process I also found out about SPML. I applied to see if Nina was a candidate for that also, and she was. SDR is a very major surgery that is followed by 12 months of rehabilitation and intensive physio therapy. SPML is a very minor out patient procedure that has little to no recovery time. It is for that reason we thought SPML would be the better option. After a lot of long conversations with parents of children that have had those procedures, and with specialists, it has been pointed out to us that although SPML is less invasive, it is not our best option. Nina's spacticity (tight muscles) is caused from abnormal messages being sent from her brain, down her nerves and to her muscles. SPML would treat the symptom of tight muscles, But SDR will treat the cause. The operation involves separating nerves in Nina's spinal cord into about 30 or so nerve rootlets. Each rootlet will be tested to see which ones are sending the abnormal messages and they will be cut, stopping the message from reaching the muscle. This will give a far more permanent, and better quality result. Again, this operation can not be done in NZ as it is a very specialized procedure. We will be traveling to St Louis Children's hospital in the USA to have it done. I would like to thank all of you for your truly heartwarming support. And if any of you have any concerns about your donation and this change of procedure please don't hesitate to get in touch with me, you can reach me at ninasjourney@outlook.com
Good luck on your journey. My daughter had SDR surgery last year and it was the BEST think we ever did...she is doing sooooo much more now than she could or would of ever been able to do. Great choice in surgery you wont regret it.
We were the first to get SDR in NZ. It has meant that our child will never need a wheelchair and is saving hundreds of thousands from the NZ government and therapy/medicines they would have had to have given her via the traditional route. We are three years down the track and wouldn't change a thing. SDR is the best option for kids with Cerebral Palsy! Best of luck, you have 100% made the right decision xx
