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Target reached for Selah's critical surgery in Germany.

  • Final update

      8 April 2024
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    This week marks the anniversary of 3 months since Selah’s surgery in Dusseldorf, Germany.

    This will be our final post.

    3 months is a marker that some deeper internal physical healing will have been done and she’s allowed to start practicing driving again, and lifting the washing basket of wet clothes to hang (yay!).

    Generally, things are going well. Selah is eating easily without pain, and gaining weight slowly. She’s been able to have little breaks away from home (pictured here with Melva at Lake Taupo for a family get together).

    There’s a bit to still deal with post-surgery (physically, mentally, emotionally), and any new pain or sensation can be disconcerting and worrying. We’re all getting counselling and readjusting to a new normal.

    In July Selah will start a Massey University preparation course ahead of starting a BA next year in creative writing. It’s all online so she’ll stay at home and it’s an easy way for us to continue helping her on her recovery journey.

    We are unsure of the future (aren’t we all!?) but we have hope for restoration and many better days.

    Thank you again for your support to get Selah to Germany for surgery.

    We will always be grateful for the incredible generosity of so many to get us there and for the additional generosity towards her post-surgery care. Thank you, thank you, thank you.

    Ngaa mihi nui ki a koutou katoa,

    Melva, Frank and Selah Ritchie.

      4 comments  |  Login to leave a comment

    • 08/04/2024 by Mindy

      I am happy to hear things are going well! All the best Selah as you continue to recover and with university. Mindy

    • 08/04/2024 by Keith

      fantastic to hear she can start some study. I know this has been traumatic for you all, but great job on making this happen for your daughter!

    • 08/04/2024 by Anna

      Wishing you all the very best for the rest of your recovery Selah. Best of luck for your studies. God bless you all.

    • 09/04/2024 by Alison

      Hi Melva, Frank and Selah. So great to read your latest news and the phenomenal progress made. Selah is looking so well in the photo (and so do you, Melva) and you will all be overjoyed that she is slowly getting back to normal life....answers to prayers ! ... after such a difficult, uncertain time... even though there is still some way to go. My Best Wishes, prayers....hope and peace and love to you all for the future and for Selah's further recovery ... including for the start of Uni course. Alison Johnson and family.

  • We're home!

      25 February 2024
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    We've been home for just over a week and it's wonderful to see Selah in her natural environment and starting to do 'normal' things like bake and do dishes.

    The next few months will see Selah having physiotherapy, massage therapy, gym/strength work, monitoring with dietitian, gastroenterologist and GP. She'll be gradually increasing walking and strength, eating and hopefully weight. Back pain and energy are still something she manages but it's all improving each week and she is weening off various medications most weeks.

    As we get back into normal life we realize how big an ordeal the last 7 months have been. There have been traumatic moments and a grind through many days and nights, sometimes just for survival.

    We are delighted to celebrate progress for the big things like pain free eating and walking without POTS, and the little things like eating together and shopping. We cannot thank you enough for your support to get her the surgery that has given her life back, and the upcoming recovery.

    We'll aim to give a final update in another month or so.

    Nga manaakitanga maha,

    Many blessings,

    Melva

      2 comments  |  Login to leave a comment

    • 25/02/2024 by Clare

      This is such wonderful news! I am so happy for Selah, and for you and Frank!

    • 25/02/2024 by Christine

      This is fantastic news. Love and blessings Chris and Trev

  • Selah is out of the Clinic

      26 January 2024
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    We had a few more days in the clinic than expected due to Selah having days and nights of nausea/vomiting. We had to slowly figure out the right and wrong combination of painkillers and nausea relief medications.

    Finally, we are together again with Frank in an apartment in Dusseldorf for a couple more weeks of recovery before heading back to Leipzig for a post-surgical scan.

    Pain and nausea are still a juggle along with trying to increase nutrition and fluid gently. I appreciate such little things these days and we try to celebrate the wins while still acknowledging the incredibly hard things. The smiles run the danger of betraying the struggle, but they're also a sign of the hope we hold on to.

    We remain incredibly grateful for the community that has and continues to support us as we go through this.

    - Melva

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    • 26/01/2024 by Alison

      Hi Melva, Frank and Selah. What tremendous progress has been made in the last few weeks in Selah's health even though there are still struggles and hard things to negotiate, but the small steps and hope are huge things to hang on to which in time will accumulate into being able to see the whole....hope and trust in God is something precious that gives us a peace that we cannot get from anywhere else. I continue to uphold you all in thought and prayer and hope that rest, recovery and scans in the next couple of weeks will bring you all reassuring good news. Love and Best Wishes. Alison and family.

  • Clinic Update from Melva

      14 January 2024

    It is day 5 post-op. Each day there are baby steps of recovery. Each movement & change is hard won.

    Since surgery Selah has had the NG tube, blood pressure & heart monitor, IV line, & 3 drains removed. She has a tpn line for nutrition & medicine, an epidural for local anesthetic, catheter, & 1 more drain. Traditional stitches are in because someone with hEDS has differences in connective tissue/skin healing which means traditional stitches tend to be better than dissolvable. She's anxious about the removal of all of these.

    She can now sit up, move to stand, & walk slowly along a hallway. She had her first 'solid' food last night without pain. A 1/4 bagel dipped in broth. It's encouraging!

    Nights/sleep are interrupted with various things. We are grateful for a room to ourselves. My meals are catered. I appreciate not having to think about groceries & meal plans.

    Frank is picking up salads for himself. He walks each day to his hotel. He walks extensively. I'm grateful he is here to help me navigate (I get lost in a building let alone streets of a foreign country). I'm grateful we play Five Crowns to pass the time. I'm grateful that he is so committed to us & thoughtful in the ways he wants to make life better for us.

    I'm grateful for the contact from friends & family. Thank you for your thoughts and prayers for us.

    May you take joy in small moments & see beauty, truth & goodness around you this day. Today I've seen a squirrel running as snow falls 😍

      1 comment  |  Login to leave a comment

    • 15/01/2024 by Cindy

      Hi There Melva,

      I am just one of the people having you in my prayerful thoughts and praying. I met Frank many years ago through Soul Survivor and he knows my son Bjorn. What an intense and difficult time you all are going through, not least, your daughter Selah. I am just reaching out with love to bless and encourage you, and to keep praying for complete recovery and wholeness. We know God is with you, but still pray: God be with you.

      ngā mihi nui for reaching out through give a little, allowing many to help.

      noho ora mai

      Cindy Brickell

  • Post Surgery

      12 January 2024
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    Surgery on Tuesday went well. It was a long day. Selah was moved from her room just before 7am for surgery prep. At almost 7pm she was returned. The surgery took 6-7hrs and was successful. It was all as expected but Professor Sandmann took it slowly and carefully.

    We are now in the second day post-surgery. Some of the tubes and monitors have already been removed and Selah, with assistance from a physio, sat up and stood today.

    Over time the pain medication given via epidural will be reduced and the pain managed in other ways. Selah is feeling the effects of her body working to heal, and because they are sensations she is not used to, it can be unsettling, particularly the pain.

    We have expected these first days post-surgery to be the hardest. Thankfully, at the moment she's getting plenty of sleep (she's asleep in the photo).

    The staff are good, monitoring her and communicating well. They are very much appreciated. They expect her recovery to be good.

    We can never say thank you to you enough. Without you Selah wouldn't be here with this chance to regain quality of life. Recovery will be a journey with ups and downs, but it points in the right direction.

    - Frank

      1 comment  |  Login to leave a comment

    • 12/01/2024 by Janet

      Hello Ritchie family. Wonderful to hear the latest news. Answer to prayers. Our Lord is awesome ✨

  • We're in Dusseldorf

      7 January 2024

    We are in Dusseldorf, Germany - 0 degrees today.

    Tomorrow at 12noon, (NZ 12am) Selah and I check in to the clinic where surgery is planned for the following day. Frank will check in to a nearby hotel.

    We meet the surgeon in person for the first time tomorrow and hopefully hear the surgical plan now that the surgeon has the detail he needs following the scan in Leipzig. It's a bit daunting as the scan showed differences to what we had seen previously, likely due to more advanced scan technique and a few months of deterioration since the last scan in NZ. I hope we can understand the surgical plan and hope we have wisdom if there are choices to be made. We hope we can advocate well and successfully for the right things at the right time, all with little knowledge of these very complex medical anomalies that Grey's Anatomy has not prepared me for.

    I do know we are in the right place and have no reason not to trust the team here and every reason to trust their world renowned expertise.

    We do have a certain peace that God is with us, has prepared a way, and is entirely for Selah's life. The advent encouragement 'do not be afraid' echoes through many voices. Rather than flinging the door wide open for the fear of the unknown, we are trying to lean in to 'do not be afraid'.

    Thank you for your support. We do feel the prayers and care of the community around us.

    - Melva

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    • 08/01/2024 by Alison

      Thinking of you all and praying that you will all know God's peace within and surrounding you over this hard time.... that everything including surgery will all go to plan, and be successful so that the outcome after ongoing care will be a fit and healthy Selah. You are a very strong family, Melva.... Best Wishes. Alison and family.

    • 12/01/2024 by Alison

      Hi Melva, Frank and Selah, So, so grateful, pleased and thankful that surgery has gone so well for Selah.... an answer to so many prayers and God's faithfulness. . We do hope and pray that recovery will continue to go well and that you will all continue to know and feel God's presence, peace and love throughout this process. Thinking of you all. Alison and family.

  • In Germany

      1 January 2024
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    Thanks to your amazing generosity we've made it to Germany. We landed in Frankfurt early yesterday morning. The trip was tough - getting some medical stuff through New Zealand airport security, navigating plenty of luggage and Selah in a wheelchair, working out the train when we got here, not to mention the hours it took and lack of sleep, but we're glad to be here. We've given ourselves a few days to acclimatise in Frankfurt before heading to Leipzig for the first part of the medical journey we're here for.

    Just getting here we're extremely grateful for many people - you for helping to make it happen, those who have done this before us and provided good information, in-laws for taking us to the airport, friends who met us there, wonderful Singapore Airlines staff, an Australian family who helped us with the train and luggage at Frankfurt airport (strangers), and strangers who have given us a hand here when it has been clear we could use some help. This whole thing is stressful, but good people help lighten the load.

    Today we took a chance to see some of Frankfurt. The cold has been good for Selah's POTS symptoms, so she was able to walk around a little. It's a beautiful city away from the area immediately outside the train station where we're staying. I reckon we'll be able to hold off sleeping till tonight, unlike yesterday after the sleep deprivation of the trip that saw us all sound asleep by 6pm :)

    - Frank

    The pic is of us at Auck airport just before leaving.

      2 comments  |  Login to leave a comment

    • 03/01/2024 by Alison

      Hi Melva, Frank and Selah. So good to hear that you have reached Germany and taking a few days to relax and see some of Frankfurt. May you know and be aware of God's presence, peace and love with you and around you, sustaining and guiding you as you embark on the next part of this journey. Thinking of you all. Alison and family.

    • 04/01/2024 by Matthew

      Was thinking of your family today on my way in to work. Thanks for this update! Praying for His sustaining presence with you all.

  • A Message From Selah

      22 December 2023
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    Hi Everyone! I just wanted to come on here and say a massive massive thank you to everyone who has donated or offered any kind of support over this crazy journey. Finding out we would have to go to Germany came with a lot of anxiety and stress over finances, bookings, travel, recovery etc. I watched as my parents missed out on sleep because of stress or wanting to get things sorted out at 1, 2, 3, 4am and on top of that there was my own stress of the recovery after the surgery. Asking for help, (in particular financial help) is a really vulnerable thing to do, so the reception of our request just proved to us that we did the right thing. I will be forever grateful to the hundreds of people who so willingly jumped in to help, it blows my mind the generosity of everyone. It feels really hard to express the extent of gratitude and admiration I have for everyone. If I could hand-write cards and send friendship bracelets (making Swiftie friendship bracelets has kind of been my thing recently, I've made over 300!) to all of you, you'd better believe I would! So again, thank you SO much for your generosity, it is immensely appreciated and means the absolute world to both myself and my family.

    All my love and gratitude,

    Selah

      2 comments  |  Login to leave a comment

    • 22/12/2023 by Mindy

      You’re welcome! ☺️ Can I have a Swiftie bracelet please? I’m a Swiftie :)

    • 22/12/2023 by Melva Ritchie

      Hi Mindy! Of course you can! If you're on Instagram you can DM me your details, my account is @selahstummyhurts, or if you're on Facebook you can find me at Selah Ritchie and I'll send you a bracelet or two (or three) ;) - Selah

  • Done!

      20 December 2023

    Due to a very generous personal donation to our bank account, we just went over our target a little. We're done! Thank you so much for your generosity! You being with us has meant so much. We look forward to sharing the journey in Germany with you!

    Frank

      5 comments  |  Login to leave a comment

    • 20/12/2023 by Angela

      Happy tears and a heart full of thankfulness to hear your news and be part of your journey. Praying for God's abundant love, strength, grace and wisdom to you all and the medical team both here in NZ and Germany.

    • 20/12/2023 by Janet

      What an answer to prayer. Blessings 😊

    • 20/12/2023 by Bridget Horder

      ❤️💪💯

    • 20/12/2023 by Bridget Horder

      ❤️❤️❤️❤️

    • 22/12/2023 by Mindy

      That’s awesome news :)

  • Target Lowered Again

      20 December 2023

    Apologies for the updates you will be receiving today as we make the last push for needed funds. I am reducing the target again due to generous donations directly into our bank account. I promise these updates will slow down once we hit the target. From there it will be updating everyone on the journey to Germany, through the surgery, and into the recovery so you can see what your support has helped with. Thank you for being with us in this.

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  • Target Reduced

      20 December 2023

    Because some people have our private bank account number, some donations have gone in there. I am reducing the target here on Givealittle accordingly so that we don't raise more than needed/budgeted. Thank you so much for the immense generosity that has been shown so far. We're almost at the target!

    Frank

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  • Why the Changed Goal?

      19 December 2023

    Further to my last update, it is our understanding that a Chief Medical Officer at Waikato Hospital is choosing not to endorse our HCTP funding application even though a gastroenterologist, a rheumatologist, a radiologist, and two Waikato vascular surgeons have told us we need to go to Germany. The surgeons wrote in support of HCTP funding. We have been offered no alternative treatment for Selah. So the system has told us we need to do this yet will not help us to do so.

    Our initial target had in mind a successful application. Now that it has failed, we need to raise another $62k. We didn't want to have to do it because everyone has been so generous. We have been very grateful.

    We are booked to fly on Dec 29th as we could not wait any longer. Everything is booked and paid for. We went into significant debt that we cannot sustain so that we could do it. It's the only option we have for our daughter. We need your help again.

      1 comment  |  Login to leave a comment

    • 19/12/2023 by Elisa

      As a young female with a very similar condition, fighting the system for over 10 years and suffering so much medical trauma, this both saddens and maddens me. I have also become very unwell, and I have also looked for treatment overseas but the financial cost is just unaffordable. As soon as I heard you mention going to Germany on the radio over the weekend, I knew exactly what you would be going for, without you even having to mention the illness. My heart goes out to you and your family, and as awful as the situation is, getting the attention through the media will hopefully better the services to those with rare conditions in the future.

      My heart goes out to you, and I wish you all the best for your trip, surgery and recovery. I wish I could help contribute financially, but being unable to work I unfortunately am not in a position to. If there’s anything else at all that I can help with, please let me know ♥️

  • Target Raised

      19 December 2023

    We have just got word that our HCTP funding application is not being supported by the person at Waikato hospital whose endorsement it requires. We are therefore raising our target to make up the difference between funds already raised and what is still needed. Surgery is booked for January 9th.

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  • What a Difference Good Staff Make!

      11 December 2023

    Further to my last update about Selah heading to hospital, I want to sing the praises of good staff. Looking through the stories of so many others with a similar condition, the battles they've had to face have been horrendous. While we've had our struggles and will be raising things we think can be done better, our journey has been different.

    We're very grateful this time for the Dr at the hospital who read Selah's file first, is completely on board with what's happening and is working with us to get the nausea, vomiting, and diarrhea under control, not wanting her to bounce back to ED and to try and make the trip to Germany happen with as much comfort as possible. She has been listened to well and they're working to help. That level of care makes all the difference even if finding what works is difficult.

    This week we will be booking flights and accommodation. Our HCTP funding application has been plagued by administrative issues and almost 2 months of delays, not lack of belief. Germany has been recommended by a gastroenterologist, rheumatologist, radiologist & two vascular surgeons. We can't wait any longer so our hope with it now, is that if it gets submitted and is successful, they'll adjust things to work with the process we need to go through. It's not ideal but it would be patient centric rather than bureaucracy centric.

    We look forward to the day when nobody has to travel to Germany & the level of care needed can be supplied in NZ, relieving pressure on the HCTP.

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  • In Hospital Again

      9 December 2023
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    After a day of vomiting and diarrhea, Selah is back in hospital this evening. I am thankful for the St John's team that turned up.

    Through her journey, along with her feeding tube she has been able to consume small amounts of liquid and pureed food orally. She hasn't been able to that for a few days so in hospital she is getting IV fluid and painkillers etc. They will also check her NJ feeding tube. Hopefully it balances her system again, unless it's a bug.

    We are still waiting to hear about HCTP funding. After nearly two months we don't know if it has been submitted yet. We cannot wait any longer as Selah's condition continues to deteriorate. To wait would feel negligent, so we have booked surgery for early January and will pay for that this coming week. We will also book flights and accommodation. We will use funds already raised, and our mortgage to do it.

    It is now a question of whether the HCTP funding, if approved, can be truly patient-centric, working with us in the process we've set with dates etc and pay things so we can be refunded, or if there is an expectation that we should work with their process, adding more time while our daughter's condition deteriorates. We truly wanted to do it exactly as required, but waiting further is now untenable.

    We believed the process would take a matter of weeks. We began the HCTP funding application work almost 2 months ago.

    If it is unsuccessful we will do more fundraising.

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  • Another Funding Update

      23 November 2023

    After some after administrative issues with the HCTP funding application we had to meet with another vascular surgeon yesterday who said his role is to determine whether or not the application moves forward.

    Following that meeting I can’t help but feel that trying to get HCTP funding to help pursue surgery in Germany for our girl as has been recommended by 3 specialists (no other solution for her condition has been given), has done little more than add to our family’s trauma. Doubt in our decision making has been sown.

    It is gutting to know that if the HCTP request is unsuccessful, which feels increasingly likely as this one surgeon’s opinion may differ from the 3 specialists (including a vascular surgeon) who have already been working with us, we will need to pursue more donations on top of the amazing generosity that has already been shown. This journey is so very hard.

    He is to have discussions with two of the specialists who have worked with us before he gives his opinion re the funding so my prayer is that they reach a consensus on what’s best and that they do so swiftly. He is yet to look at her scans and may subject her to another test.

    I’ve often publicly sung the praises of our medical system. Those praises have eroded as I’ve bowed and scraped to get what I believe my daughter needs and seen the impact of the poor parts of the system on my family, particularly this year.

    - Frank (Dad)

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  • Funding

      17 November 2023

    We were hoping to be in Germany for Selah's surgery this side of Christmas, but our window to do that has almost closed as the High Cost Treatment Pool funding process continues to play out. It has hit some hurdles along the way as all the right details and paperwork are put in place. We now need to be referred to another vascular surgeon at Waikato Hospital to cover off all the right paperwork. As stressful as it is, we continue with the process as we know raising the further money needed would be hard.

    Since it is unlikely that the process will be completed early next week, our best hope now is to be in Germany in the beginning of January for the surgery. In the meantime we keep managing Selah's pain and low energy.

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  • Funding and Timing

      9 November 2023

    Thank you so much for your support!

    Our application for funding was sent at the end of last week. Additional information was required, added & we believe it was resubmitted yesterday. We're hoping it's processed extremely quickly.

    The last date possible for surgery for this year in Germany is 7th December as they account for 14 days staying in hospital following the surgery. We are assuming they close the clinic Christmas/New Year & that is why 7th December is the last date.

    Prior to that there is a scan needed in a different city a week before.

    Prior to that, the time to fly to get there. To get it done we would need to be flying in less than 3 weeks.

    And of course prior to all of that, negotiations & bookings for the above along with finding accommodation options that are dwindling fast.

    We can't just book things now. It feels like it would be much easier but it's not the right process & we really do want the funding for the huge costs for this surgery and hospital stay overseas.

    It's a tight time frame and a nerve wrecking one.

    The first surgery of 2024 is 4th Jan, though that would have to push out until after the scan was done. We're going for as early as possible as Selah's condition deteriorates & her pain increases. It's also a much easier time to break over NZ Dec/Jan for all of our other commitments. We'll do whatever we need to but really hoping this works for her to be out of hospital for Christmas.

    Thanks for your support & hoping with us.

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  • Goal Changed

      30 October 2023

    Kia ora koutou, we have chosen to reduce the Givealittle target from 70k to 40k. We have had 30k donated to our personal bank account so the need from Givealittle has decreased. All your support has been huge and spoken volumes to us as a family.

    Our hope is that our funding application is successful so that we won't need to raise any more funds. Should it be unsuccessful we will need to raise the target again.

    Thank you so much for your support.

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  • NJ tube Changing

      29 October 2023
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    We're currently in hospital to get Selah's NJ tube changed. It's how she currently gets most of her nutrition. It got dislodged from where it's meant to sit in her small intestine, and had been causing vomiting. The time in hospital to get it done has involved days of waiting (at the time of writing we're in the 8th day) and one attempt to remove it that went badly. As you can see in the image, it turned into a knot, and was too painful to get out since Selah's body wouldn't respond to the sedation she was eventually given. It will now be done under general anaesthetic sometime in the coming week and we should be able to take her home later in the week. A big experience for a minor procedure.

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