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Please Help Our Son Alex Get His Life Saving Surgery Overseas !

  • Thank You Thank You Thank You !!!!!!!!

      23 January 2024
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    Happy 2024 Everyone,

    We hope your year has started off well for you and your loved ones. As there is not long to go until Alex’s fundraising page ends we wanted to do our final update.

    From the bottom of our hearts a massive thank you from Andy, Alex, Hannah and myself - we have been overwhelmed by all the love, support and generosity you have all shown us.

    We can never repay you all for what you have done for Alex but please know we are so very grateful. Alex turns the magic number of 17 that we have been waiting for at the end of Feb, so after this if changes haven’t been made here in NZ it’s off to Germany for his life changing operation.

    In the meantime, thanks to all of you wonderful people Alex continues to be able to get the medical care he needs for his conditions. He is getting to see a Gastro specialist in the Waikato that has an interest in these rare conditions, has started a specialist medical physio rehab programme, gets his much needed regular joint stabilising injections and to go to a specialist periodontist as connective tissue disorders unfortunately affects all the teeth and gums.

    So much love and big hugs to you all, keep safe, happy & healthy and make sure you do that mantra - Live, Laugh, Love and always have hope.

    Jan, Andy, Alex & Hannah xxx

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  • Merry Christmas Everyone !!!!

      19 December 2023
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    Firstly, we would like to pay our respects to the family & friends of the 3 courageous woman that lost their battle in the last 3 months from the same conditions as Alex - Georgie Ferris, Dr Rachel Palmer & Stephanie Aston. They all fought an amazing fight & our thoughts are with their loved ones.

    Alex has had another growth spurt & every time he grows it sends his body haywire. He couldn't hold down any food or drink so he was sent to hospital where he had a x4 day stay getting rehydrated & making sure he could tolerate the NG tube staying down. Unfortunately he lost another 2 kgs. His body’s condition is deteriorating so he is needing more joint stabilising injections - he must of had about 50 plus now.

    Lots of people have asked us once Alex has his operation does this mean he is fully recovered. We wish with all our heart that this was the case but it doesn’t. He will always have Ehlers Danlos but by fixing the compressions this will hopefully reduce the pain level from a 10 to a 3, blood can flow around his body as it should, be able to eat & drink & he can finally start to life live.

    We can never repay everyone’s kindness and generosity but please know it means so much to us all. From our family to yours, have a wonderful festive season, may it be filled with lots of love & laughter, new adventures, making special memories & above all fantastic health.

    Merry Christmas & Happy New Year.

    Jan, Andy, Alex, Hannah xx

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  • Alex's Health Journey

      3 December 2023
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    Firstly a massive thank you to everyone who purchased goodies from Downlights NZ. We really appreciate your support and we hope the recipients of these beautiful products enjoy them.

    Latest update on Alex is that his neck keeps locking up due to his connective tissue disorder which means for him he can’t see properly out of his left eye & is in a migraine state until he gets a stabilising injection. If one joint going wasn’t enough, his shoulder decided to play havoc, so this needed an injection as well.

    Unfortunately his weight hasn’t gone up in the last few weeks, so his NG Tube feeding plan has been adjusted a bit to hopefully put on more calories. On the upside, his last POTS blood pressure test was a great result and he managed to pass his NCEA English and Maths through Northern Health School - so lots to be thankful for.

    Change needs to happen here in NZ, so we can find solutions for rare disorders, fund life saving drugs & do surgeries if options are available here so people don’t need to go overseas. Many heartfelt thanks to everybody who are trying to make this happen.

    Take care and have a great week ahead.

    Jan, Andy, Alex & Hannah x

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  • Alex finally home & Last few days to shop

      20 November 2023
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    Hi Everyone,

    Hope you have all had a great day. Alex is back home with us, which has been amazing !!!! He still has his NG Tube as his permanent attachment but it is doing the trick as he has put on 7kgs.

    We were hoping Alex would have had his surgery by now but all the specialists have advised us that if Alex can hang in there it will be better for him to get through the surgery & the recovery afterwards if he can put on as much weight as possible and being male it will be better if he is 17 and stopped growing. From a hand scan he did in hospital it shows he has one more area to fuse and then he has stopped growing and from a body scan ideally he needs to get to 65 kgs - which is definitely an uphill battle with the chronic pain and nausea he suffers from when he eats and drinks but Alex is giving it his best shot.

    Only a couple of days to go to order beautiful candles and diffusers from DownLights NZ - At the check-out, all you need to do is pop in the magic code AlexK in the discount box and 30% percent of each sale will be given by Downlights to Alex to support his health journey -on all products excluding candle supplies and the outlet section.

    A massive thank you to everyone who has brought something from this very special business doing great things for amazing kiwis.

    Take care.

    Jan, Andy, Alex, Hannah x

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  • Give A Gift This Christmas That Keeps On Giving

      9 November 2023
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    We are very excited to be able to offer you a Christmas Shopping Fundraiser for Alex in conjunction with an amazing social enterprise, Downlights. They have wonderful home fragrance products to choose from and knowing they are made with love by young adults with Down syndrome and learning disabilities is the icing on the cake.

    At the check-out, all you need to do is pop in the magic code AlexK in the discount box and 30% percent of each sale will be given by Downlights to Alex to support his health journey. https://www.downlightsnz.com/discount/AlexK

    Be in quick as promotion run from 8th - 22 Nov 23, on all products excluding candle supplies and the outlet section.

    Happy Shopping Everyone

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  • Project Alex Gaining Weight

      3 November 2023

    Hi,

    I hope you all had a great start to November. We were hoping that Alex would be home by now but unfortunately he is still in hospital. The feeding tube process is a full on one, not to mention the constant sore nose & throat that Alex has to put up with. Unfortunately the chronic pain & nausea hasn’t decreased but on the upside he has put much needed kgs on - still a long way to go but it's a great start.

    A spinal X-ray revealed Alex has mild scoliosis & from a hand scan it showed one more area needed to fuse together. Thankfully this means he has nearly stopped growing as every time he does his conditions gets worse.

    Most people with these conditions have slow transit gastroparesis but Alex goes against the norm & has rapid transit. He had a Barium Test done to see if they can gain info about this & also look into the SMA. SMA occurs when the duodenum is compressed causing blockage & prevents progression of food or fluids into the rest of the small intestine.

    Thanks again for all your support and for sharing Alex’s story around. By you all doing this he has heard from other teenagers in NZ that are on the same health journey. He said it was so awesome to chat to others that just get how hard day to day life is.

    I saw this quote on the wall of the hospital - On particularly rough days I like to remind myself that my track record for getting through bad days so far is 100% & that is pretty good.

    Take care & have a wonderful weekend.

    Jan, Andy, Alex & Hannah x

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  • Project: Weight Gain

      6 October 2023
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    Hi Everyone,

    I hope you and your loved ones have all had a great week. Ours has been an interesting one that’s for sure, as Alex got admitted on Monday for another stint in hospital.

    As the saying goes most teenagers eat you out of house & home and I wish this was the case for us. Unfortunately Alex’s gourmet treat for the next little while will be a NG feeding tube 24/7. This has been inserted down into the stomach to bypass his problem areas and hopefully alleviate some of the pain.

    With his stomach rapid transit issues & chronic nausea it will be lots of trial and error but this will hopefully allow his body to absorb the vital nutrients and put on the weight he desperately needs. (Pity I just can’t offload some of unwanted kilos into him)

    So hospital is going to be home for the next few weeks but on the upside he has a million dollar view overlooking the SkyTower and out to Rangitoto. Wishing you all a brilliant weekend and once again thanks for all your support & best wishes.

    Take care,

    Jan, Andy, Alex, Hannah xxx

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  • Alex’s Very Own "Make A Wish" Day Out

      25 September 2023
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    I thought it would be a nice change to do a Give a little update on something fun and from start to finish that was such a magical day & one that all of us will never forget.

    Before Alex gets his call up for his operation, one of things he wanted to do more than anything before we headed off to Germany, was to go to Hampton Downs to see the race cars.

    Thanks to one of my amazing family members and the fantastic team at Hampton Downs, Alex got to do one better and he got to go with driver Tom for laps around the race track in a very flash & fast Lamborghini, see the race control room and view a range of other fancy cars racing around the track.

    It was so special to see Alex do something that he has such a passion for, he couldn’t wipe the smile from his face.(even when he was feeling a bit dodgy afterwards). He said it was amazing to feel like a normal teenager for once and was well worth being in bed the next week for.

    On another note, as per a story in Stuff today another NZ teen is winging her way to Germany as we speak for her life saving operation. We wish her and her loved ones all the very best for her operation and a speedy recovery afterwards.

    Take care guys, have a great week and for everyone that has school holidays have lots of fun x

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  • One Step Closer !

      18 September 2023
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    Well it was a full on rollercoaster of medical appointments and emotions last week - it started with seeing a specialist dietician who was amazing and knew all about Alex’s conditions. The plan is while we are awaiting the scan we need to get him surgery ready as much as possible. At this stage they would rather try other things than put a feeding tube in Alex.

    Then out of the blue we got a phone call to say could we get to Hamilton as a scan spot had become available to have the Ultrasound Abdominal Duplex and CT Angiogram that Alex needed. The specialist radiography was so wonderful and explained to us the strict criteria of testing that he will be doing.

    Let's just say even with no medical degree we could see that Alex’s insides shouldn’t be looking like they are - blood vessels are twisted, going backwards instead of forwards, they are in places where they shouldn’t be and major arteries are pressed against organs. It was all very scary and informative at the same time. The next step is the scans and report are sent up to Germany and then it will be back down to Hamilton to chat about the results and the next steps…

    We are planning different fundraisers behind the scenes so will keep you posted. Thanks again for your amazing support & thank you all for sharing Alex’s story far and wide. By you all doing this for us, changes will start to happen here in NZ for rare disorders.

    Have a terrific week ahead. Best wishes to you all from the Kynoch Family xxx

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    • 19/09/2023 by Katrina Amiria

      Hi Guys, I’m so happy for you that the scan date has been moved forward. Hang in there. Lots of hugs from us xxx

  • Thank You & Scan Update !!!

      8 September 2023

    Thanks again to everyone who has donated to Alex’s give a little page so far and for spreading the word about it to all your different networks, on socials etc. By you guys doing this, we have heard from other families with kids that have the same conditions as Alex and to be able to chat to other parents that are going through what we are has been really beneficial to us all.

    We received great news today that Alex should be on the October list for the scan he needs to confirm which type of Vascular Compressions he has. Just by going by his symptoms and being guided by the specialists, it is looking highly likely he will have three - May Thurner Syndrome, Nutcracker Syndrome & MALS Syndrome. All of which effect different major arteries and prevent blood flowing properly around the body, putting pressure on different organs.

    Unfortunately we haven’t been able to get the scan done sooner, as this is the only place In NZ & overseas apparently that has the Radiography strict criteria in what Germany needs - all will be revealed very soon thankfully.

    So again a massive thank you for all your support and have a brilliant weekend.

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  • You are all LEGENDS !!!!!

      31 August 2023
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    Firstly a massive thank you from our family to you all for donating to help Alex. We have been overwhelmed by all the kindness, generosity and support you have shown us.

    You have all been superstars in spreading the word about his story which we truly appreciate as this raises awareness of these chronic conditions and helps the people who suffer from them.

    Alex is a frequent flyer having blood tests, this week they are checking his kidney function as the compressions are causing pain on his left side and unfortunately he has lost more weight. We are waiting on a date for his specialised 5 hour scan, fingers crossed it will be soon and then it's a plan for Germany !!!!!

    Take care everyone and have a terrific rest of your week. xxxx

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