Update for 26/04/2013
26 April 2013Zion has just had his heart surgery and is in Starship now recovering.
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2 SickKids 1 Wedding 1 Family
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Update for 26/03/2013
26 March 201325% of all donations go to Starships research into Systemic Onset JIA. so far our Starship account has $231.85 and once that hits $1000 I'll gift it to them. We are currently focusing on Zions Heart Op trip to Starship because thats happening in June and the Fam will stay at the Ronald McDonald House and Id like to help cover the costs of that and the transport etc because Step Daddy may need to take a few days off work to be there so its one thing on top of another compounding the pressure so if you can spare even ONE DOLLAR to our cause it is heartily appreciated. If you want to send Petrol vouchers or Supermarket vouchers to help out over that week in June you can email me for the address. Hugs all round and Thank you so much to everybody for your love and support.
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Update for 25/03/2013
25 March 2013UPDATE 21/03/2013: Storm had an appointment yesterday at the Child Health Centre which 2 Doctors from Starship came to attend, along with Storms specialist and Physiotherapist. Storm has so far not had any significant changes to her condition since starting on the Embrel, and needs to go back into Hospital to have all the small and large joints in her feet injected with a big ""wack""of steroids to ""try put out the flame"" A specialist has to come and do this proceedure so we are awaiting an appointment for this, Storm is at home untill then. Storm also has to wear supportive shoes at all times now, which i went straight out and purchased yesterday, Storm says her feet were not so sore last night, so money well spent i think, i bought her New Balance crosstrainers as they had all the things the Doctors told me she needed. If Storm gets a rash, fever or a very sore throat she is to go straight back into specialist, Storm has a slight sore throat at the moment which specialists are watching closely. Yesterday i learned a little more about Storms condition also, Storm is likely to end up needing assistance to put food in her mouth, reach up to get things, dress herself, get up off the floor, out of and into bed, brush her teeth, open doors, walk stairs, walk unaided, and write. So far Storm needs assistance to open jars, do up and undo buttons, brush her hair, cut meat and reach up sometimes to get things :( She uses crutches although not as much lately which is a good thing, but has trouble with stairs and ""holds onto the walls to get up and down them. Storm wont give in to this condition, she plays as hard as she can, attempts everything! And never lets on shes sore untill after shes done it, for fear ill stop her :) RE ZION: Zion will have his Heart Surgery in June in Aucklands Starship Childrens Hospital. If it doesnt work by the second time he will be implanted with a artificial defibrulator??? dont quote me on the spelling or correct wordage lol my head swims a bit with all this medical info...... Thankyou to all those caring loving people who have helped us and stood by us through this journey so far, i couldnt do it without ALL of YOU, those i know and those i dont, so thankyou, we love and appreciate you all so very much...... i cant even find the words to explain what youve all done!!! Arohanui xxxx Dana and Famz
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Update for 21/03/2013 Thank you so much for your care :)
21 March 2013We really appreciate your kindness and generosity. Thank you :)
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Update for 13/03/2013 Thank You Tazi
13 March 2013For getting into the spirit of my last update. Thats Awesome :)
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Update for 13/03/2013 Donations so far for Starship
13 March 2013The amount we have put into our Starship account for February is $62.50 Thank you so much to the people who donated in Feb. Feel very proud of yourselves, we do :)
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Update for 08/03/2013
8 March 2013My daughter is struggling with the fact I have included her wedding in this fund raiser so for her peace of mind and yours, if that inclusion prevents you from donating to the kids, The amount I will donate that way depends how many of you add the words FOR THE WEDDING to your donation comments from this point on. I think that will fix a couple of moments of angst in a couple of directions. Please feel free to run your own fundraisers to this cause as is my niece and her partner currently running a Trade Me Auction for a Fishing Trip on Lake Taupo with proceeds after costs coming to our Givealittle fund. Thank you all so much for your donations thus far. The Magnetic underlay appears to have eased some of Storms joint pain and has enabled her to get a better sleep at night and have happier starts to the day :)
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Update for 26/02/2013 Thank you all so much for donating to our cause
26 February 2013Last week I bought Storm a second hand Magnetic underlay in good condition off Trade Me, and it arrived yesterday. Dana put it on Storms bed last night and I got a text first thing saying Storm had to be woken up this morning for the first time and she is happy and doesn't want to get out of bed. The body knows doesn't it! Magic. Thanks to YOU, the people who have donated, I was able to get this item for her so feel very proud of yourselves for contributing to this item that has helped her instantly. Storm also had to go to Auckland Hospital last week for a Bone Density test and I contributed towards the cost of fuel to get her there from the funds pool.
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Update for 15/02/2013
15 February 2013http://www.trademe.co.nz/Browse/Listing.aspx?id=563398213 Charity Auction on Trade Me for Fishing Trip, Rock Carvings & Picnic-Lake Taupo. Start price covers the trip costs (and I'm probably going to have a go at bidding on that for myself ) Check it out Iv been on this trip and usually these kind of trips are $60 an hour and don't include anything besides your place on the boat.
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Update for 15/02/2013 Fundraising Auctions on Trade Me
15 February 20132 Sick Kids 1 Wedding 1 Family update; Trade Me are allowing us to run fundraising auctions and are refunding the fees we are charged on the auctions. My niece and her partner in Taupo will be Auctioning a day trip on their boat on the lake with stylish picnic lunch, bubbly, fishing licenses and use of rods combined. Her member name is dandan17 on Trade Me if anyone wants to add that to their favourite sellers so when she lists the auction you will get an email from TM. All our fundraising auctions will have 2 Sick Kids 1 Wedding 1 Family in the title or sub title of the listing.
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Update for 14/02/2013
14 February 2013I wrote to Trade Me and asked if I could set up a fundraising page for people to sell their unwanted stuff to raise funds for the cause. They said for me to gve them a list of member names of people who will be running Auctions for the Cause and they will keep and eye on the Auctions and refund the fees we get charged. How Cool is That??? The auctions supporting us will have the words 2 Sick Kids 1 Wedding 1 Family in the title or sub title bar. Members will add their member name when they deposit the money into our Givealittle account. Iv got the ball rolling by putting my STILL up for auction for the cause. Iv never used it, might as well donate it :) You can find it under member name Sharon.Nz on Trade Me
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Update 08/02/2013 Thankyou so much for your Support
8 February 2013Stuff Nation published our story thismorning on the Stuf.co.nz website. They are running an assignment called Little Battlers' Kids beating the odds - where we were asked to share stories about our kids who are battling to overcome challenges. I am so grateful to them for helping us in this way. It means so very much to us and we Thank you all for caring and sharing your love xoxoxoxox Hugs all round Sharon and Dana and Family
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Update for 05/02/2013
5 February 2013Hi all, i am Storm and Zions Mother Dana. Firstly id like to say how proud i am of our little girl, she has been through so much in the last year, she never complains, always smiling and the first to help another in need. We attended a xmass party for sick kids last year and there was another little girl there with a similar dissability to Storm, she was very upset about having sore legs, so Storm up and gave her a crutch and they spent the day one crutch each together :) i was a very proud mummy that moment. My son Zion, he is the 'Big Brother'of our family the looker out for, and the encouragement to keep on going. we never hear about his condition, or what he cant do, theres nothing he cant do, he wont let there be..... his philosophy is if your not doing what you love to do theres no point in living and if it kills him doing it well at least he's lived :( i try very hard to stay a sideline mum. this is what he told the doctor who told him he couldnt play anymore, and he played the day after coming out of hospital, much to other parents horror and mine i dont think i breathed the whole game. I want to thank my Mum, although its not enough to show how touched we are for all the effort she has put in to try and help our little family, there are no words to describe, how much appreciation we have for this woman, who is raising my nephew as well who has Autism. We love you Shanna, to the moon..... and back :) Thanks mum xxxxxxxxx
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Update for 05/02/2013 Morning everyone
5 February 2013Ok so yesterday Stormi had her specialist app which she attends regularly. She also had her app for her first Eternercept (Embrel) injection, this is a 3 moth trial. Yesterday we found out Stormi is starting to go into another ""Flare Up"" now a flare up for Storm is a little different as she hasnt ""Flared Down""since diagnosis, hence the medication not working and the start of the Embrel treatment. So when i talk about Storm going into a Flare up it means that her condition has worsened and needs immediate attention, ie: Hospital. Caroline Meadows is Storms northland specialist, but she and a couple of other kids in northland with types of JIA are also under Starships Rheumatology unit. One of the best in the world. Going into this app yesterday i thought we were going to be getting some good news as i thought Storm was improving, she is not :(, and if she wasnt starting the Embrel injections yesterday she would be in hospital for a huge 1000mg wack a day, for 3 days, of steroids to try and stomp out the ""FLAME"", and discharged on the 3rd day if all seems to be working. But Storm started the Embrel yesterday, and we couldnt do the huge dosage at the same time, and Caroline is hoping the Embrel works and we wont need to go into hospital. Re-check in a couple of weeks, with close monitoring untill then, of her day to day condition. Storm has also had to come of her pain killer as it is damaging her stomach, if she cant handle the pain, it may be injection pain killers. Also..... Due to neglect from Lyric (Storms cousin)s parents, Lyric has had the worst case of school sores i have ever seen in my life, with blisters the size of eggs covering her feet and legs. Lyric visited us with my father a week ago for the night and Dad didnt know she had these untill she took her shoes off when she arrived. My Dad took her straight to the doctor as it looked as though she had bee n burnt. Dad took Storm along for a ride, and on return we discovered it was school sores, so now Storm has school sores, which is taking its toll on her already weakened body as she has no immune system due to it being supressed so it cant damage her organs as fast. This means ive had to wash and dry in hot water all her clothes bedding toys and anything she has touched in past week. And if the other kids or us get it, she will get it again. :( Please if anyone is coming to visit us, which we love seeing you all, please make sure you and your children are not unwell or have contagious illnesses as this is not fair on Stormi or us :( Storm wont be starting her first day of school this thursday :(
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Update for 03/02/2013
3 February 2013Sometimes I will be copying and pasting comments from Dana off our Facebook page. I'll try to remember to write a note on the bottom when I do that
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Update for 03/02/2013
3 February 2013Storm starts Embrel, medication by injection twice weekly that needs to be done at hospital untill im confodent enough to administer it myself :/, and she has a specialist app to assess her condition. 19th Feb, 4pm, Auckland, Storm has Bone Density test to see how much if any damage her current list of daily meds has caused her bones. Will update tomorow arvo with any news from appointments Please join our Facebook page under 2 Sick Kids 1 Wedding 1 Family
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Update for 02/02/2013 How this Fundraising will help the Family: Some History
2 February 2013Im Danas Mum and I started the Givealittle web page to help them through a rough time. Last year Dana got a job with WINZ Whangarei and completed her training and was given a trial contract. Storm was sick and being diagnosed and needed treatment during this period and Dana had to drop and run a couple of times and take an hour or two off work now and then to take her to apointments etc. During their smoko's the staff and Dana talked about Storms illness and Danas workmates were very supportive. Unfortunately one of Danas bosses wasnt so supportive and took Dana into an interveiw room where she told Dana she was sick of hearing about Dana and her poor sick child and that Dana should shut the F&%k up and get back to her desk and do her job. She also said something along the lines of If you f&^k with me I'll F&^k with you and drew her hand across her throst in the cut throat gesture. Dana rang her sister distraught and told her about it, that she dreaded going in to work and she was having axiety attacks and I was in the background listening and once the phone call was over and I heard about it I (being me) wrote a letter of complaint to Paula Bennett and I also sent it to about 10 other Ministers and some newspapers. Dana didnt want to lose her job so she didnt want to do anything about what to me was gross workplace bullying. The boss got suspended while the investigation went on. During the interview with the Ministry Dana said she didnt want to lose her job and she didnt want the boss to lose her job and that I interfeer in her life sometimes without asking permission (and I do, Im her Mother and no one is going to reduce my girl to tears and make her dread going to a job she loves and get off scott free) and Dana turned down an offer of compensation because she thought she would keep her job by not rocking the boat and just taking it on the chin. Cutting the long story short, The Boss got her job back and when full time positions came up a couple of months later Dana was the only one who didnt get a job offer even though her work record was impeccible and she made the least mistakes out of all the trainees when hooking people onto benefits. Dana really needed that job because the second income helped cover the expenses for Storm and Daycare etc Im left wondering how that Boss kept her job when the one at WINZ in Kerikeri lost hers over a breach of client confidentiality that lead to an altercation at a pub or cafe up there during the same time period. Im fully aware of this familys finacial situation. They are robbing Peter to pay Paul and missing the WOF check on the car because the kids needed school uniforms and stationary because their father didnt send his contribution through when he said he would so Zi even had to miss the first day of school as they have a No Uniform No school policy at Bream Bay College. Zion and Storm are not Rawiris children. Dana and Rawiri have a little boy together (Lucion and hes nearly two) but Rawiri treats the others like his own. Im very impressed with Rawiri. He said to Zion last week, Im going to take you and Lucion into the barber with me tomorrow to get our haircuts. I was listening in and to me that says a lot about who he is as a man. He includes Zion in his picture as a son and treats Storm like any good man would treat his own daughter. Top Marks. to be continued....
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Update 02/02/2013 How this Fundraising will help the Family: My Intentions
2 February 2013Im the Maternal Grandmother of this Family. Im New Zealand born and I raised my kids on my own through the 80's and 90's in and around Ohingaiti, Hunterville and Palmerston North, Manawatu in Nz. As I have started this Fundraising page on Givealittle, I am the one who deals with how the Donations are spent. I know you will be wondering about how this part works so Im creating this and other files to inform you as time progresses. If I were a rich woman I wouldnt have to run this campaigne at all, but Im not. What I am is a generous woman on a low income who regularly donates to causes that cross my path every year. I figure if my $10, $20 or $30 donations can help people in need thats the least I can do. Im on an IB and Im raising a Grandson too. Im a member of GRG.Org.co.nz and Iv had Hunter since he was 3.5 months old. Hes 4 years 3 months now and I just had my 50th Birthday last week. I have 5 Grandsons between 1 and 13 years old and One precious Granddaughter Storm. It crosses my mind that there must be millions of people like me on this planet who live from a place of giving help and assistence where and when we can, to the best of our ability from what we have in us (and our banks accounts) to draw from. I appreciate the handout I live on and I appreciate that it comes from the working people of New Zealand and over my years I have done a fair amount of community Volunteer work to repay whats been paid forward by way of financial assistence, and did start a wee Tree and Shrub biz a few years back called Planet Replant that I did from my heart and didnt take a wage from. I sold trees and shrubs at not much above wholesale prices so even the poorest familes could afford to buy food trees and beautiful shrubs for their gardens. Iv donated and planted several properties (2 were my girlfriends) so their places were worth more when they sold them and both those girls did sell and were able to upgrade their houses. Stuff like that. I dont ask for much. I like a peaceful life and I have few wants. Im not an instant gratification chick I believe in building ones empire one brick at a time with a long term focus on the goal. I have the top credit rating one can attain in NZ and I dont smoke (or drink much :) ) and Iv made my own mostly to save costs in that area. Iv lived on a budget system that I have used since I was 18 years old and that I refresh every 2.5 months and keep record books of and I have a good brain for money management and have been able to buy 2 properties over the years, one is the house I live in and the other an ex petrol station. I bought one on the back of the other because it was ridiculously cheap and I thought it was a pot of gold at the end of my rainbow ( Budgeting services can be provided just ask LOL ) I had just opened the ex Garage up as a second hand shop when Hunter came to live and had to close the door the first winter as hes asthmatic and now recently diagnosed on the Autism Spectrum. Hes high functioning but still a handful, like 3 kids in one and we live rural so that presents a whole lot of problems with travel and time and daycare options and money. BUT I do intend picking that business up again when Hunter goes to school, slightly changed in focus but still forward moving and on the plan. Now. To the Donation plan: I will be asking for copies of appointments attended and travel distances before reimbursing them or if need be will forward in advance of appointments if they cant find all the money from their own pool for the bigger trips to Starship and the costs involved when that occurs. I imagine that would be hard for a family on two incomes. They are on one income now and are struggling with the juggling of the costs of living and extra costs of taking Storm to treatment and checkups. Then Lucion got Asthma last winter which we hope was just due to the house they were living in. They have moved into a new rental now and eveyone already feels healthier in the new house. I really think having 2 children with serious health issues and another with a ? over Asthma is a lot for one family to cope with and Danas always been a bit of a stick about carrying the load herself and not needing help ...but I know better. If I dont step up now and ask you all to step up just a little she's going to break and then they will be worse off and I want to keep that smile on her face. I aim to give a sizable chunk of the funds raised to Starship Hospital for research into Storms condition. Storm is one of 4 people in NZ with the type of this disease that she has, and shes the youngest. The oldies amongst us will understand the pain of arthritis and how important having the right support when sleeping, tools for mobility and support where they need it. For a child to be suffering this type of pain is unbearable for me to even think about and worse when its one of my own. The Wedding: I have told Dana and Rawiri that I will match dollar for dollar what they save toward the wedding as an incentive to them to do the best they can for themselves. They already postponed the wedding once and with Storms condition being unpredictable, The Wedding is a priority to me. I want Storm be able to attend while she is still walking, so the photos have her in them, and so she can share the love and fun of the joining of these two people who love each other and her and with the rest of the extended family. The chosen wedding venue has been changed to another one to halve the costs and the initial number of invited on the Wedding Breakfast list was also halved. I went North just over a week ago and went with Dana to look at what is available in Taipa where they will be Married, and (we) made the decision re the venue but it would be nice to be able to hang the walls of the United Rugby Clubrooms with fabric to set a beautiful wedding scene and not have (with respect I say this) the faces of the History of Rugby in the region lookig over everyones shoulders during dinner and being what the Bride and Grooms party will see from where they sit. I do not intend making this a lavish expense from the Fundraising pool, only doing what we can on a tight budget to make it as beautiful as we can as simply as we can. We intend asking the local Garden Centres up there if they will lend us plants for a donation etc If we get really lucky, maybe one of the big marqui hire places will donate a setting for the cause. Im pretty cheeky and Im going to ask everyone because we all know no one gets anything unless they ask in this life so its worth a crack. I have time to give to this project. It is all I can do to rally the people and ask for even a dollar from you toward the cause to help me provide some comfort and care and a special occasion for this family who I know will pay it forward for the rest of their lives because thats the kind of people they are. to be continued......
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Update for 01/02/2013
1 February 2013 -
Update for 01/02/2013
1 February 2013Hi everyone thankyou so much for your donations, we are deeply moved by your contributions. its been a hard road for my daughter and her partner over the last year, especially loosing her job because of this, but at least shes crying now because of happiness and the overwhelming amount of support she has recieved just in the last week. So a huge thankyou!!! xxxx
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