Let’s help Emma eat again - please help us fund critical medical treatment not available in NZ
Help us to give Emma her life back
Hauraki, Auckland
Emma is a 13 year old from Auckland. Emma has been diagnosed with Hypermobile Ehlers-danlos Syndrome (hEDS) and Abdominal Vascular Compressions (AVC)
Due to AVC, Emma cannot eat, and has lost a significant amount of weight, relying upon a nasal feeding tube for the past 12 months.
Emma is a fighter, and wants to take back control of her life.
She wants to do the simple things that we all take for granted; to eat, drink, be a ‘normal teenager’ and have fun with her friends. Treatment for AVC is not available in NZ. Her vascular surgeon has recommended specialists in Germany to release the compressions, enabling Emma to have the quality of life that she deserves.
hEDS is a rare condition caused by genetic changes that affect connective tissue resulting in joint hypermobility, skin hyperextensibility, and tissue fragility. hEDS is the reason that Emma is suffering from Abdominal Vascular Compressions (AVC), causing severe tummy pain, nausea and vomiting preventing Emma eating or drinking. More recently Emma has been diagnosed with an abnormal Elastin gene that may be responsible for many of the challenges she faces.
Thank you very much for your donation , it’s greatly appreciated.
Use of funds
All money donated will be used to enable travel to Germany, and to partially meet associated testing and surgical costs.
Latest update
Final Thank You from the Hartley Family 17 June 2024
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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