Anyone else from New Zealand or Downunder ?

[lisawoody]

I am amazed at how few people there are in NZ with Spina bifida!!! Where are you all? There don't seem to be any support groups specifically for SB. :33a:

[sean]

G'day lisa I'm from OZ, NSW. It baffles me too, where are we? If the statistics are right there's supposed to be 1 in a 1000 born with SB, 21 million in OZ ???????
Read a second hand comment in a post, a surgeon saying to a mother to be, looking for support, something like, you'll only find SB people who are 'doing well' on a computer.
It haunts me, are others with SB doing it so tough, no means or motivation to reach out.
Been posting in the adults with forum for a while, finding by comparison of others in other countries, Australia does a pee poor effort regards support and imformation.
I'm thinking of ways to find everyone, I have no resourses, it would be great to have an OZ,NZ site. Lived in the south of NZ Christchurch for a year ?????1976-7, had the best time!!!! sean.

[janjanwhit]

Hello. my baby has sb and i am from New Zealand, the Taupo region. No support groups that i have heard of. They say that one baby a year is born with sb in the Waikato hospital on average. When my baby was in there he was one of three!!!

[lisawoody]

When my Erin was born in June down in wgtn there hadn't been another child with since the Sept before!! But then I'm not really suprised the way they pressured me to have an abortion, a lot of people would have given in to it.
We (my hubby and I ) are looking at setting up a web site for people with SB. Not sure if there is much use for it but we could always link them to here as well. Keep in contact.
Lisa

[lisawoody]

How old is your baby? Did you have her/him in Wellington? if you ever need any help/ideas let me know.

[janjanwhit]

They made me feel like I was the only person in history not to terminate. They still treat me like that, but less so. He is seven weeks old. Born 23.02.09. Had him at Waikato hospital. It would be so great if you set up a site. How old is Erin?
Fergus is L3-5. He has hydro but no shunt so far. Movement to the ankles. One club foot and one rotated.

[lisawoody]

She has been through almost everything you can for a kid with SB, she has had 13 lots of surgery. Erin had a shunt put in at 5 days old but it blocked at 3 months so they took it out (after me throwing a tantrum at them) and since she hadn't had any problems they didn't put another one in and touch wood there are no issues there. Erin had a large area on the xray it appears to be L1 to S1 so she has no movement or feeling from her waist down but when she was little you could tickle her left foot and her right toes would curl up, we laughed with the neuros that they had rewired her wrong. Occassionally if Erin is having injections in her legs for antibiotics she will complain that she can feel them but normally the docs like using her feet for any IV meds as she just sits there and watches them put them in sometimes offering advice as to which vein might be the best!!
Hope all is going well with you, it can be extremely trying but you will soon be an expert on termanology (if not give me a yell, I have just graduated with my Bachelor of Nursing) and remember you know your child the best and if you don't like or know what the dooctors are talking about tell them.

[ollieholmes]

im not from New Zealand but i would love to visit one day and do some travelling around the country. My dream is to make it to Wanaka for the airshow one year. I am also a big Lord of the Rings fan and i would love to see some of the places they filmed. I am also a great lover of the outdoors.

[lisawoody]

My husband is born and bred in NZ and everytime the air show is on he says he's going but he never quite makes it!!!lol My great uncle designed the Lancaster bomber and my husband has 2 uncles that flew in them in WW2 so we are very keen on the old planes. But more so on trains at the moment we are designing a g-scale garden layout which is quite fun, all our girls think we are quite mad but my hubby, youngest son and I are determined that we are going to be up and running this summer.
If you ever make it to NZ we have plenty of room for visitors and you will love all the scenery around NZ.

[Sarahhhhh]

*Puts hand up*

Aussie over here. :D

[ollieholmes]

My husband is born and bred in NZ and everytime the air show is on he says he's going but he never quite makes it!!!lol My great uncle designed the Lancaster bomber and my husband has 2 uncles that flew in them in WW2 so we are very keen on the old planes. But more so on trains at the moment we are designing a g-scale garden layout which is quite fun, all our girls think we are quite mad but my hubby, youngest son and I are determined that we are going to be up and running this summer.
If you ever make it to NZ we have plenty of room for visitors and you will love all the scenery around NZ.

We once started a N gauge railway but it never got finished. We also started building a 5inch gauage live steam engine but that has still not got very far.

As for the Lancaster we are very lucky to have one still flying with the RAF in this country. There is one in Canada but last time i herd she has been grounded for this season.

[Theresa]

I am not from NZ, but my mom was and I still have a lot of family in and around Christchurch. She passed away 3 years ago, and my favorite memory is when I got to go "home" with her for a visit. I had Flynn about 2 years after she passed, and still am p'oed that she didn't get to see her. I asked my aunt there if we had any family members with SB, but she couldn't think of any. We want to come someday with the kids for a visit, but need to save for a while! So get all the families together and let's have a big convention in NZ!!!

[lisawoody]

We won't talk about rugby or cricket to Sarah LOL. Theresa my 2nd oldest girl has just moved to Christchurch to go to uni, and she is loving it, my oldest boy also lives down there. It gets bloody cold in winter so make your visit a summer one.
Apparently there was a SB coference last year open to medical staff and parents were invited to take part in different areas but there was very little notice of it and unfortunately Erin had to have surgery the day it started so I didn't make it but I will be looking for the next one coming up. Getting a group together would be a great idea.

[Dodger67]

Lisa broke the no sports rule, so I'm allowed to point out that Aussie lost the 4th ODI, the Series and the top spot on the ICC 's ODI ranking. We will get them next time for the Test ranking.
Regards and condolences from South Africa.

[Sarahhhhh]

I hate cricket. :p

[janjanwhit]

Apparently there are sb clinics at waikato hospital. I might go to one, its a 2.5 hour drive.

[lisawoody]

We were told there are clinics in Wgtn, but each time we went down (3 hr trip) we would only get to see one doc as the others were tied up with other cases so we gave up, the paed surgeon ( Mr Bowkett)comes to Wanganui 2 times a year and he has also given me his cellphone number so if I have any issues that Wanganui hosp can't deal with I just call him. This works out really great, except for last month when Erin was due for ortho visit in Wgtn and I rang Mr B and said we were going to be at the hosp and could he take a look at Erin, he said great and we ended up spending 8 days down there as he was really concerned about her bladder infections. We have been back home 2 weeks now and are still battling them. Erin had an IV line put in on Monday and fortunately we are allowed to come home with it in, much better than sitting around hosp all day, we just have to go in each morning for the next dose and flush it at home every 6 hrs or so to keep it going.
I love the pictures of you children, very cute, baby looks a bonnie wee thing.

[lisawoody]

I have always found that when Aussies are losing they suddenly hate the sport!! Sorry Sarah not meaning you of course!! I do think though that the Aussie cricket team should admit they are not the top team any more. Super 14 was good this week THE HURRICANES WON!!:peace:

[Melz]

Been posting in the adults with forum for a while, finding by comparison of others in other countries, Australia does a pee poor effort regards support and imformation.

Exactly!

I'm from Sydney and it was extremely hard to find help. My mum found that there is more help for people that are mentally disabled or people that are physically disabled because of an accident - but nothing really for the people that were born disabled.

[lisawoody]

In our town there are so many support systems for kids with autism and people that have accidents but only one agency sommerville centre (which used to be Crippled children society) that offers support for all physical disabilities, in fact this week they are having a sibling fun day so my 9 and 8 yr olds are going along. It's great that this site is back up and running. And I promise I will not make any more comments on Aussie sport. In fact we have quite alot of our family over in brisbane, so i shouldn't be rude, sorry.

[Dodger67]

But being rude about Aussie sport is fun!

[lisawoody]

THE HURRICANES of course!!!! How are the S.A teams going??

[fragelina]

An amazing athlete and an amazing win, Adam Hall won gold in the Standing Slalom in Vancouver's Winter Paralympics. Awesome!!!:clap2:
So that is where one of us is!

[lisawoody]

An amazing athlete and an amazing win, Adam Hall won gold in the Standing Slalom in Vancouver's Winter Paralympics. Awesome!!!:clap2:
So that is where one of us is!

Very sad to hear yesterday that this amazing boys Mum died in a car crash just 100 metres away from their home, she had just returned from dropping him off at the airport.

[Papillon]

Just saw this thread - I'm from "Down Under", Sydney to be precise (although there are several million people in Sydney, so it doesn't tell you PRECISELY where I am). I can sort of fit into both sides of this thread, though - Dad is from NZ (born in Greymouth, moved to Waimate, then moved to Christchurch, then came here and met Mum and stayed!). He cheers for whoever is winning when NZ play Oz in sport! He's been here 2/3's of his life, and took out dual citizenship last year. Almost all my relatives are in NZ - Mum only has one brother who does not have kids, and she does have a few cousins but we never see them. Dad has a sister who has 3 children, who are all married and all have kids (none with SB unless it is Occulta and very well hidden).

[Dodger67]

Your attention please New Zealanders, I have an important anouncement:
The word of the day is - Stormers!!! :dance2:

[lisawoody]

SHOW OFF!!!!!:scream:

[Papillon]

I saw that on the news tonight - congrats to the Stormers!!

[Dodger67]

SHOW OFF!!!!!:scream:

Sore loser!:kleenex:

[lisawoody]

*Lisa is standing in the corner sulking*:connie_mini_lalalal

[Daniels Mum]

Hi Lisa,
My hubby and I live in Cambridge and have a little boy, Daniel now 11 months old and very cute. Re website, I am currently investigating doing one, maybe we could collaborate on ideas etc, I have been making a list over the past year on useful stuff and info. I have also made enquiries on forming a NZ SB Association but this is in it's early stage (we need 15 members to incorporate and cost is $100). Can't imagine there would be any difficulty in finding 15 interested people but maybe the other way is just to set up the webpage first. Feel free to contact me [by Private Messaging]

[lisawoody]

My brother owns a web design company so if we need help with that he is willing. I will email my details later Erin has just got out of hospital this morning so I'm just sorting out the rest of the family.

[Missy B]

Hi I am 22yrs old from whangarei & was born with sb.

[Jellybean]

Hi - Sorry a bit late posting this but yes there have been Spina Bifida support groups in Wellington and Auckland. Our Wellington one hasn't met for several years as our children are teens and twenty- somethings now.
The Wellington City Council may still have a contact address for a parent. I would be happy if anyone wants to contact me too. I have been fighting- literally for years for help and my latest battle (The Office of Human Rights representing me and 6 other families) is with the Min of Health- WE WON payments for parents- but the MOH appealed- which is due to be heard at the High court in Auckland 13 Sept 2010 for 2 weeks- google the Human Rights Commission then try any of the parents involved- as there has been a lot of media cover. Best wishes to all:happy065:

[lisawoody]

Hi - Sorry a bit late posting this but yes there have been Spina Bifida support groups in Wellington and Auckland. Our Wellington one hasn't met for several years as our children are teens and twenty- somethings now.
The Wellington City Council may still have a contact address for a parent. I would be happy if anyone wants to contact me too. I have been fighting- literally for years for help and my latest battle (The Office of Human Rights representing me and 6 other families) is with the Min of Health- WE WON payments for parents- but the MOH appealed- which is due to be heard at the High court in Auckland 13 Sept 2010 for 2 weeks- google the Human Rights Commission then try any of the parents involved- as there has been a lot of media cover. Best wishes to all:happy065:


Hi Jellybean, Good to hear from you. Hope your battle next month is successful (bloody ministry). We have been there too, my oldest daughter was caring for Erin but we ended up paying her ourselves as MOH wouldn't. We have found now she isn't living at home that they are willing to pay it. Very frustrating though.

[Sonya]

:Banane21:

My name is Sonya and I am based in NZ as well (Waikato at the moment). I was born with Spina Bifida and had surgery in Auckland by Dr Mee at the Auckland Hospital when I was 9 years old. Scary as all hell for a kid to go through that surgery, but I am thankful to all the doctors for the successful operation that many thought wouldn't work.

I am now working in the Radio industry, have full function of my body, and am living an awesome life. I have been hunting down support groups (possibly even charities that fund raise for Spina Bifida awareness/research) but don't seem to be able to find any.

Hopefully there will be some in the future that can provide parents, children and anyone effected by Spina Bifida support and guidance and a little more insight for medical teams so they can help out more people in the way that Dr Mee helped me out.

Merry Christmas to everyone, I hope you are surrounded with your loved ones and have a safe break.

[colachick]

Hi

I'm Lisa, nearly 35 and I have SB. I lost my foot last year due to repeated infections and currently going through rehab.

[kiwi born]

hi all ,im from chch ,im 43 born with sb .i have been looking for others aswell but havent had much luck .would be great to see a website open where we can be in touch :)

[Dodger67]

Please take a look at this post and the following ones - http://www.spinabifidaconnection.com/showthread.php?p=31671#post31671

[Kaawa and Sheree]

hi we are from the manawatu ( Palmerston North)...... my gurl is 23yrs this year, complex health issues. she is one of 6, one passed away 5yrs ago. Out the 5 Sheree has had major surgery, osteomylitis, septicemia, amputation below the knees on both legs... she has VP, Scolisis (rods) 2-3 pressure areas, She is very limited at this point due to her health, would be interested in hearing from others from kiwi land