26/05/2025
Hello Facebook community, this is Amelia. She is Joe and Maddy's daughter from here at DFI. She is raising money to get treatment in Germany. Amelia has been in the hospital for 5 months with a debilitating condition that has left her bedbound. If you can help or share this post, that would mean so much to her.
Welcome to Amelia's Hope for Healing. We have set up this page so that anyone who would like to follow along on Amelia's journey to overseas surgery, can get updates in one space.
Today marks 147 days in Waikato hospital for 2025, 172 days in total that have been spent here since June 2024.
For those who don't know our story, Amelia was a happy, healthy normal kid. At age 11, she began to experience episodes of severe dizziness, and was diagnosed with POTS (Postural Orthostatic Tachycardic Syndrome). In May 2024, Amelia was hit with covid and developed inflammation of the chest cavity that landed her in hospital. Early into that admission, she lost the ability to eat or drink- she was unable to swallow anything and was fitted with a feeding tube. DRs believed at that point it to be a food avoidance, anxiety or an eating disorder, but it soon developed into severe pain even with the smallest amounts of feed being put through her stomach.
Amelia persevered through the second half of 2024, attending school and dance, and doing her best to keep things normal despite living off small amounts of smoothies, soups & enteral feed, rarely hitting the nutritional daily intake goal.
The week of Xmas 2024, she deteriorated quickly and was no longer able to tolerate anything orally or by her tube. She was admitted to Waikato hospital on new years eve and shortly after was diagnosed with abdominal vascular compression syndromes- Nutcracker syndrome, Superior Mesenteric Artery Syndrome & May Thurner Syndrome.
Amelia is now fed primarily through an intravenous central line (TPN) with a small amount of enteral feed into her small bowel. Not long after she was admitted, she lost function in her left leg, which left her unable to walk or weight bare at all since January. She remains unable to eat or drink anything orally all these months later, with pain levels that are at times unbearable, despite high doses of pain medications being given daily.
Amelia has been extremely lucky with her medical team- she has been given great medical care by a dedicated and supportive team who have done everything they can to ease her pain & keep her nutrition steady, but unfortunately there is only so much they can do & the options for treatment in NZ are limited.
She has gained a fantastic amount of weight from her TPN nutrition, but none of her symptoms have been relieved. Central lines & TPN nutrition are extremely high risk for infection and other complications as we are currently experiencing. Her central line split last week, causing pain and leading to days with no nutrition or adequate hydration & the chances of infection. When things like this happen, we are reminded that these interventions are not long term solutions and are extremely volatile - her progress can so easily be derailed and her health balances delicately between stable and emergency, and things can change very quickly.
We have now made the decision to travel overseas for surgical treatment.
We have set up a give a little page to help us raise the funds we need to get her to Germany to have the life saving surgery she desperately needs, in the hopes she can regain her quality of life, ditch the tubes & lines & get back to school, dance, music, cooking- all the things that made her so happy before this awful condition took hold. Any donations that we receive are appreciated beyond measure and we are so grateful for any & all support.
We would like to thank all of our friends and family who have rallied around us this year- all the food parcels, child care for the boys, care parcels and gifts for Amelia, visitors from near & far, prayers and well wishes- everything has been so deeply appreciated by our family and we could not have got through without the love and kindness that has been given to us. ###xx
https://givealittle.co.nz/cause/amelias-hope-for-healing-help-our-beautiful-girl
