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Support for Pam, Jon, Benny & Ollie

  • Update of Use of Funds

      11 October 2023
    Posted by: Givealittle

    With the reopening of this page, please note the following changes:

    Updated 11/10: Ongoing costs related to specialist appointments, expensive scans/tests, travel costs and allowing Jon to take time off work to support Pam

    Previous use of funds: Petrol costs to visit Pam in hospital, support with housekeeping, things Pam may need e.g. noise-cancelling headphones or other comforts + any extra support that Jon may need running a household alone with two young boys (5yrs and 4yrs)

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  • PART 2: Feeling seen, heard and validated - and a long road ahead

      11 October 2023
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    I have a name for my weird blood pressure thing, Orthostatic Hypertension.

    Dr Burling has put a recommendation for a PEJ to be inserted. A stomach (well intestinal) tube rather than in my face. Another thing I'm glad someone is actually listening to and doing something about it.

    I have new medication to try, 1 to try beat the candida I get so regularly

    1 to help with things moving through my gut and 1 to help with some EDS symptoms.

    I have a few things to try and help with some symptoms as well as appointments in the next 2 months for more prolotherapy injections - this helps repair the damaged tissue where needed.

    While I got some answers, there is still a lot to be explored. The Dr's I'm being referred to are in touch with specialists in Germany, whom I may need to see in the future. So it's all on the right track.

    The next bit of good but hard news is I have a specialist surgeon appointment on 1st November 2023 in Tauranga. The appointment alone is $210, and the scan required is $5,000. Plus the continued appointments with Dr Fraser Burling being $300-$400 per appointment, and the possibility of surgery (currently only done in Germany for $160,000 + travel costs).

    This next step in Pam's treatment plan is extremely costly, appointments + travel costs + Jon taking time off work, it's a lot for them to bear. So we're reopening this Givealittle page to support Pam and her family.

    You can learn more about EDS here - https://ehlers-danlos.org.nz/ceds/

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  • PART 1: Feeling seen, heard and validated - and a long road ahead

      11 October 2023
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    12 September 2023 - Pam finally has some answers and a plan. Pam's update below:

    I saw the one and only amazing rheumatologist, Dr Fraser Burling. His wait list is 4-5 years long. I was told I was an urgent case, so I was bumped up, and the wait was still 1 1/4 years.

    My 1 hour appointment went for over 2 hours. So much discussion, 'testing', manipulations and a prolotherapy injection.

    I have been diagnosed with classical EDS (Ehlers-Danlos Syndrome), with the likelihood of a rare COL1A1 gene, based on my history. Genetic testing will confirm this or provide whatever gene/s are causing it (which I need to raise funds for, along with many more specialist appointments: more to follow on that).

    EDS is a connective tissue disorder. Connective tissue is a part of pretty much every part of our bodies. For me, it effects my joints, migraines, skin fragility, fatigue, and likely my gut issues, but it's not the cause of them.

    He is sending referrals to look further into my gut issues. Vascular compressions being the major one as many symptoms point to them. He suspects possible MALS and Nutcracker syndrome. None of this has been tested for yet, despite me asking for it. So I'm glad its happening now.

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  • A partial diagnosis and further tests to come

      9 October 2023
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    Hi everyone! It’s been a while since our last update, and that’s simply because it’s taken this long for Pam to get any further answers.

    I will do a separate update with Pam’s partial diagnosis and next steps in her health journey, but just wanted to pop by first to let you know we will be reactivating this page to help support Pam and her family with the next massive financial costs on the horizon.

    Thank you all for your support ❤️

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  • 10 weeks in hospital, and the light at the end of the tunnel

      29 June 2022
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    It's been a while since our last update! Pam has now spent 10 weeks in hospital... 70 days away from home. She is almost at her goal of 80mls an hour of her NG tube feeds. Once she reaches this milestone, she will be allowed to go home to manage the next phase of her health journey.

    TPN feed is off!

    She only has one machine!

    The hospital staff, dietician etc. are working hard on getting her ready to go home

    Pam has also recently been battling Influenza A, so trying to get this fever under control before release is paramount.

    Having home so close is amazing, exciting and nerve wracking all at the same time. Pam doesn't know what home life will look like, but at least she'll be with her family again and have her own bed. Which makes the need for home outweigh the nerves attached to it.

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  • Amazing turnout for fundraiser walk

      26 May 2022
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    WOW! What an incredible turnout it was on Sunday 22 May for "Walk the Pit Rim for Pam" fundraiser walk. An amazing local community of over 140 people getting their best red outfits on and supporting the Coburn's. The total amount fundraised was just over $3,000! I bet there were a bunch of happy people with their spot prizes too, thank you so much to all the generous donors and sponsors. Pam and Jon are so touched and I know there were a lot of emotions on Sunday.

    As you can see in some of the latest photos, Pam's hairstyle was debuted on Sunday as well - of course she got red!! Looking absolutely lovely :)

    Today, 26 May, is Benny's 6th birthday and of course marks 6 years since Pam and Jon became parents. Jon and the boys are visiting Pam in hospital today (after having their traditional cake for breakfast) and opening his presents together as a family.

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  • Pain, Pampering & The Pit Rim Walk!

      20 May 2022
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    Pam has been accepted into the Intestinal Failure Unit in Auckland, and will be there for further testing either next week or the following week. This will hopefully get her closer to a diagnosis and/or solution/plan moving forward.

    Also, after 4 weeks in hospital, Pam’s pain is finally being managed to a point where there are a few hours in the day where she’s close to being pain free! (It’s the small wins, right?!)

    Pam and her family have been so lovingly cared for by the local community, friends and family, and most recently she was treated to a mini pamper session from her hospital bed. Eyebrows, eyelashes, and fingernails to help lift her spirits and feel a little more ‘normal’. She also has a new hairstyle to debut but first to show her hubby and boys! 😉

    Don’t forget this Sunday 22 May at 10am is the fundraiser walk in Waihi. There’s loads of spot prizes, raffles happening and a ❤️RED❤️ themed dress up for the walk! Bring your family, friends, kids and dogs and donate whatever you can, while having a fun day out 💞

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  • A Future Without Food

      11 May 2022

    Pam is now 3 weeks in hospital (for the 2nd time since last year). There are still many more weeks ahead.

    Due to Pam's intestinal issues, actual food and enjoying a meal is not something in Pam's forseeable future. The aim now is to get Pam onto successful tube feeding, so she can get off the TPN (intravenous feeding through the veins).

    Pam's gut issues caused the first tube-feeding trial to fail. Dr's were trying to increase at a normal rate, but this did not work.

    So now, going slowly (only a few mls every few days) is the only thing Pam has to hope tube feeding will work.

    There is a little bit of hope that things will improve over time and just maybe by some miracle, a gastric bypass surgery could be on the cards again. This is the only way Pam will be able to eat food again, so we continue to hold out hope that this will happen.

    The last couple weeks have been spent processing this news and imagining how life will be in the future. If you have any advice for amazing-flavoured chewing gum, please let Pam know! Actually tasting flavours in her mouth really is a novelty these days

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  • Walk the Pit Rim for Pam! Sunday 22 May

      4 May 2022
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    Pam's lovely friends and community have set up a fundraiser walk in Waihi! All info below + on the Facebook page: https://fb.me/e/1E9knMUSC

    LET’S WALK THE PIT RIM FOR PAM!!!

    Hello amazing community we are reaching out to you!! There is a lovely local family that has been dealt a crappy hand and really needs our support right now!!!

    We want to hold a “Walk the Pit Rim for Pam” to raise some much needed funds for this family! Pam and her young babies love walking the pit so let’s go!

    We are busy planning and finalising details as we speak! But please see the following confirmed info & save the date and join us!

    Date - Sunday 22nd May 2022

    Start - Pumphouse 10am

    Finish - Pumphouse Prizegiving 12noon

    Entry fee - Donation of your choice for Pam

    Theme - Wear red Pam's favourite colour

    If you would also like to donate or be a sponsor for this event please make contact with Toni Wood (toni@bardenandco) or Lana Schofield (Lanaschofield@windowslive.com ) via email or PM.

    Note - All donations will go direct to the family, sponsorship in the way of items for spot prizes/silent auctions/raffles and help to provide light refreshments after the walk are very welcomed!

    Please share this post and join us too!

    - Team Walk the Pit Rim for Pam!

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  • A little more about Pam's health journey

      30 April 2022

    All the Gastroenterologists in NZ are working on her case to figure things out and the specialised team in Auckland is liaising with her team in Tauranga Hospital. A lot is up in the air; nothing is certain. Well, one thing is - Pam will not be having any kind of surgery to fix it because of how much of her GI tract is not working. Ever. This is now a lifelong thing that is to be hopefully figured out, then managed for all her life. For now, the right now, Pam can't get nutrition in any normal or feeding tube into the gut. So she has a PICC line which TPN is going through. Which means she has a catheter going into a main artery and almost right into her heart (a line that's 8cm long going from the top of her right arm). They will put a special kind of intravenous food through it 24hrs a day to get nutrition in for the short term.

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