Lifesaver needing lifesaving surgery -Liz Cook

My name is Elizabeth and I don't want to ask for help. I have had this disease my whole life and have managed to hide most of my symptoms from people. Now I am at the end stages of Achalasia and can't do this alone.

Achalasia is a very rare disease where your esophagus has improper to no movement. I have type 4 which is no movement and the newest discovered kind. Most people who get Achalasia are older and their bodies are shutting down on them or they have had an accident that causes it. I was even more rare and have had it since birth.

My husband, Ben, and I were living in New Zealand, where he is from but as of the end of Sept 2023 moved back to Canada to get an esophagectomy (full removal of my esophagus) surgery here as the surgeon in New Zealand refused to get my notes from Canada and stated "Well, I guess I am going in blind because I have never seen anything like this."

Ben is autistic and has uprooted his whole life to get me here just to have the safest and best medical care. Our poor cat, Mischa, has gone from being a free-roaming cat (inside and outside) to just inside so I can get the help I need.

My Kiwi friends have done so much to help us get here and my Canadian friends have taken up the cause and are helping me on this side of the planet. I guess I am asking for help on all of our behalf.

My achalasia causes me a ton of physical pain: pressure build up in my chest, burps from the depths of hell, back pain, nausea, foam build up in my esophagus, slow digesting, not eating much, exhaustion, slow healing, can't focus/think, emotionally drained...

As this disease comes to an end, I have found out that if this surgery doesn't occur soon and my precancerous cells mutate to cancerous, I will have less than 5 years to live-no matter what surgery or chemo they do. We have now sold everything we owned to get to Canada and are now here but can't work and need a hand to get through the 6-12 hour surgery and then 6-9 month recovery if nothing goes wrong. We are asking for help to buy my medications, food, and the items for our little apartment as we used the money from all our worldly possessions to get here and live thus far.

I have been conditioned growing up to not ask for help or be vulnerable. This is brutal to ask for help but being sick is incredibly expensive and I have done it all to this point without my family's assistance. Ben's family have helped heaps already over the past 8 years and we now need external support to get us the last bit.

I can't wait to have surgery and then be able to have a long life with my amazing husband. I was told as a kid I would die before I hit retirement age from this disease. I found out earlier this year I could have a full life after this surgery or I could die before 5 years is up if this surgery doesn't happen soon. It has been a hell of a year and I am empty of all 'spoons' as is Ben. Please help us through this so that I can have what most people have - the chance to live a long life.

Sincerely,

Elizabeth, Ben, Mischa, friends and family

Hey all, if you are in NZ please feel free to deposit money directly into 06 0115 0432559 00 under Elizabeth Ackles or if you are in Canada feel free to use my email eaackles and name Elizabeth Cook.