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Let’s help Emma eat again - please help us fund critical medical treatment not available in NZ

  • Final Thank You from the Hartley Family

      17 June 2024
    Posted by: Sarah and Wayne Hartley
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    It has been a year since Emma had surgery in Germany. Learning in Germany that there was something majorly wrong with Emma's bowel was tough and then having that confirmed in New Zealand has meant not only has Emma had to recover from major abdominal surgery but she has also faced the challenge of mentally processing that food is not able to move through her stomach and bowel. Currently there is limited help for Emma's condition in New Zealand. Emma is back at school and incredibly focused on achieving level 3 NCEA. Her mental toughness, ability to push through on limited calories with such challenged health is inspiring. Over the last year, we have continually felt so grateful for the opportunity to improve Emma's health with the German surgery. From our family to yours we pray a blessing on you all and are so very grateful for your support. You can continue to follow our journey at: https://www.facebook.com/EhlersDanlosxTeen

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  • Emma Update

      21 November 2023
    Posted by: Sarah and Wayne Hartley

    Greetings, we hope you are all well. To update you:

    Emma has come home after three weeks in hospital. It was a planned admission to support her oral intake with feeding through a tube as she is only able to eat a few hundred calories per day. Unfortunately both feeding into the stomach and intestines was not successful with Emma becoming very unwell. She was incredibly gutsy surviving 12 tube placements that resulted in her vomiting it up when the feed was turned on. Subsequently, doctors did a gastric emptying study at Auckland Hospital which we were told by the Radiologist showed Gastroparesis: meaning food is not moving through her stomach and intestines. This is why post Germany Emma has not been able to keep food down. Her compressions are fixed but she has a second condition with her bowel. In two weeks, she will have a colonic transit study that assesses movement through the large intestine. Starship doctors have finally begun to acknowledge that Emma has Ehlers-Danlos Syndrome and Gastroparesis and it is becoming clear to them as it was to the German Doctors that Emma's bowel is not working. Starship doctors are now unsure of how to increase Emma's caloric intake as they are trying to avoid IV nutrition. Once testing finishes they will seek advice from expert doctors. The journey is much bigger than we imagined and we are grateful to have had your support this year. We pray a blessing on you all.

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    • 22/11/2023 by Staci

      Hi Sarah & Wayne, I ‘ so sorry to hear Emma becoming very unwell. I really hope she’s getting better soon. I ‘m here now is I want to let you know here is a person maybe can help Emma , he uses energy healing to people with untreatable illness conditions. I’m one of the donors and a member of NZ allergy group. Please trust me this is not scam or forcing you to believe any of religion, it’s something we experienced before, and I want to share with you hopefully it can help you. If you are interested, I ‘ m happy to share you our story and more details. Staci

  • Emma enjoying being back!

      14 August 2023
    Posted by: Sarah and Wayne Hartley

    Emma is enjoying being back in NZ despite the cold. It is wonderful to have the comforts of home and catch up with family.

    Emma has started at the Northern Health School and we are hoping this might open up some opportunities to connect her with other teens as her journey is currently very isolating.

    Emma loves cooking and is enjoying making food she can eat. She is mastering the art of creating high calorie and high protein food which is not easy when you are allergic to egg, nuts, dairy and vegan!

    Emma has started to work with a physio to regain strength. She is able to walk for a decent length of time and is working on sitting up for longer periods in the day. Managing the pain from the stents used to protect the veins where the compressions were - is a challenge.

    Emma's bowel is still not working we are working with a nutritionist and continue to look for a doctor who can help us. Emma is still not able to eat solid food - it causes excruciating pain and the food is still coming up many hours/days later undigested. We have been told that Emma's progress in this may take up to a year after the operation owing to her complications with her bowl.

    Emma is really enjoying not having a NJ tube and being able to go out in public without people staring at her.

    Emma is weary from all she has been through but is facing life bravely. Thank you for your continued encouragement and prayers.

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    • 14/08/2023 by Bob

      All the very best for your recovery Emma.

  • Emma out of hospital

      29 June 2023
    Posted by: Sarah and Wayne Hartley
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    Emma has been discharged from hospital and is now recuperating in our hotel for several weeks to ensure she is well enough to travel back to New Zealand.

    We are so grateful to the doctors and nurses at clinic Bel Etage. Their professional care and attention was much appreciated.

    We also want to thank everyone who has supported us. Thank you for your financial donations that helped pay for the operation. Thank you for your prayers and messages of encouragement.

    Emma's journey has been challenging and continues to be challenging with pain and nausea as her body learns to digest food and deal with the pain.

    We hugely admire her tenacious personality as she learns to set little goals and focus on her recovery. We will keep you updated.

    Warmest regards,

    Sarah, Wayne and Emma

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  • Emma is through surgery.

      14 June 2023

    Emma underwent surgery on the 7th of June. After several very rough days including a serious scare the day after the op, Emma with the help of a physio managed to stand up and take a slow lap around her hospital room yesterday. While still in alot pain and discomfort, Emma is feeling (and looking) much better than what she was just a few days ago. Best of all, the NJ feeding tube which she has had for the last 12 months has now been removed, and she has started to eat a few teaspoons of 'real' food 2-3 times a day. Thank you everyone for all your kind messages, thoughts and prayers as Emma continues on her road to recovery post op. We'll provide further updates in the near future.

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    • 14/06/2023 by Gleny

      I am so looking forward to seeing 'before and after' pic's of Emma when she starts to show a little 'fat' and that she is enjoying food again. XXX

    • 14/06/2023 by Mille

      Hang in here Emma every new step is be okays big hugs love Mille x

    • 05/07/2023 by Gleny

      So happy that Emma is now out of Hospital and is she starting to eat normally, or just little bits at a time. I am sure you and Emma will have POSITIVE thoughts that this will have her on the road to a normal teenage life again.

  • Emma has arrived in Germany

      29 May 2023
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    We have made it to Germany! To everyone who has donated to the Give a Little - we are so grateful for your kindness and the support to help us get to Germany to see expert doctors and make a way forward for Emma. We are in Leipzig and tomorrow we meet with Dr Scholbach who will scan Emma to confirm the abdominal vascular compression diagnosis we recieved in New Zealand and provide information for the surgeon. We are so incredibly grateful to each and every one of you for your love and support. Love Emma and family.

    Follow Emma's journey:https://www.facebook.com/EhlersDanlosxTeen?mibextid=ZbWKwL

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