Help Dayna Beat Achalasia

$11,860 of $20,000 goal

Raised by 123 people in 29 months

I am an aunt and Godmother to Dayna DeDekker, a wonderful young lady who has been experiencing severe health issues in recent years.  Dayna, who is 25 years old, has been diagnosed with Achalasia, a condition in which the muscles of the lower part of the esophagus fail to relax, preventing food from passing into the stomach.
Diagnosed  in one in every 150,000 people in North America, the cause of Achalasia is unknown and there is no known cure.
What is known is the effect that it has on the lives of people suffering from the disease .  Achalasia is divided into Types 1, 2 and 3 with Type 3 being the most severe.  Dayna was diagnosed with Type 3 Achalasia in 2014.  In Dayna's case, the esophagus seizes tightly and stays seized with the food getting stuck.  This causes extreme pain while waiting for the spasm to relax or until she vomits.  The pain of a spasm has been compared to that of a heart attack.
There is also a flap at the top of the stomach that opens to allow food or drink into the stomach.  Dayna's flap doesn't work properly with food sometimes getting stuck on top of the flap.
In September 2015, Dayna underwent surgery, a heller myotomy and fundal wrap, a procedure to help relax the esophagus.  While Dayna initially got some relief from the surgery - she was able to sip water without it getting stuck - within 6 months all the initial symptoms returned.  She also had to deal with severe acid reflux, a side effect of the surgery.
Achalasia has taken an immense toll on Dayna.  In 2 years she has lost 27 pounds, going from a healthy weight of 135 pounds to her current weight of 108 pounds.  She has gone from a strong, athletic woman who loved playing hockey and soccer to being too weak to participate in any athletic event.  She is no longer strong enough to work at her job at Nike and has been on disablilty for the past nine months.  Being unable to eat normally has resulted in a severe lack of nutrients in her system and the deficiency causes many problems such as lethargy, lack of concentration, anemia and a low immune system.
Through a family friend, Dayna was directed to Dr. John E. Pandolfino of the Northwestern Memorial Hospital in Chicago.  Dr. Pandolfino is considered one of the top experts in the world in the field of Achalasia.   He recently reviewed Dayna's medical files and has agreed to see her.  
The good news is there is hope... Dr. Pandolfino  is  optimistic that he can help Dayna.  The bad news is the consultation and tests are extremely expensive - the estimate for X-rays, an esophagus motility study, upper GI endoscopy and the consultation is $15,000 Cdn.  Further expenses of travel, lodging and local transportation could result in an additional $1500 cost.
After the initial consultation and tests, there is a possibility of having to return to Northwestern to undergo a surgical procedure but we will cross that bridge and its financial toll when we come to it.  To say the initial cost is a staggering amount of money would be an understatement and it's a total that far exceeds the financial capabilities of Dayna's family.  They are struggling with knowing that a treatment which could possibly immensely improve Dayna's quality of life is outside of their reach financially. 
That is why this Go Fund Me page is so important - this opportunity is too important for Dayna to pass up and we have to find a way to allow Dr. PAndolfino to help her.  The sessions at Northwestern are scheduled for March 7 & 8 th so we must act quickly.
No contribution is too small in this moment of need.  Any contribution is welcomed and greatly appreciated.  We kindly thank you for your support towards Dayna and her family.  Please consider sharing this page to help spread the word.
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My dad Jeff DeDekker wrote the following

Before I begin this update, let me apologize for a couple of things. One, I apologize for the long delay between updates. The last 18 months have been hectic, busy, frustrating and emotionally draining as we’ve worked our way through a difficult health care system. And secondly, I apologize for the length of this update — a lot has happened in the past 18 months so be prepared for a long read. Okay, here we go . . .

I took Dayna to Northwestern University Hospital in Chicago in March 2017 to see Dr. Pandolfino, who is recognized worldwide as an Achalasia expert. After a number of tests and a consultation, Dr. Pandolfino recommended that Dayna undergo a surgical procedure — Peroral Endoscopic Mytomy (POEM) — that would help Dayna. He stressed that the procedure would not cure me but would make a significant improvement to the quality of my life. That was the good news. The bad news was the procedure would cost $50,000 Cdn and since the procedure is done by a handful of surgeons in Canada, we could not get financial assistance from government health agencies to go back to Chicago.

The next step was finding a surgeon in Canada who would perform the procedure for Dayna. This is where the road got a little harder for us there was no assistance provided by government health agencies with this search. Leanne and I took to the Internet to see if we could find a surgeon and in August 2017 we had a telehealth conference with a doctor from Kingston, Ont. After speaking with us and reviewing Dayna’s past tests, he decided that he would not perform the procedure, so we were back to Square One looking for another surgeon.

During this time Dayna was struggling to eat and experiencing a great deal of pain from the condition — chest pain, back pain and spasms in her esophagus. Her G.I. doctor in Regina injected Botox into her esophagus but it provided no relief.

In January 2018 we were able to get Dayna an appointment with a Thoracic Surgeon in Saskatoon as there are none in Regina. He was excellent but is not yet trained in the POEM procedure so there was nothing more he could do for her.

Later that month we contacted Dr. Shlomovitz of the Toronto General Hospital and he agreed to a telehealth conference. After the discussion he agreed to perform the procedure, but he required a specific test here first. Dayna had the required test done in February, but we had to wait for 12 weeks for a doctor to read the results. The lengthy wait was because there is only one doctor in Regina available to read these specific test results which is extremely frustrating.

In March 2018 we went back to the G.I. doctor to see if there were any further treatments he could suggest. He offered to try a dilation of the esophagus and out of desperation we agreed. At this point Dayna couldn’t keep any food down and struggled getting liquids down. Dayna got no relief from the dilation but her follow up with the doctor wasn’t until June.

In April 2018 we contacted the thoracic surgeon in Saskatoon who previously saw Dayna in January and he booked her into a Saskatoon hospital. We went to Saskatoon and Dayna had a feeding tube inserted. The hope was that the procedure would allow Dayna to get proper nourishment.

In May 2018 we had to send test results to Ontario and that took a month to get done. It was another frustrating delay.

Initially Dayna struggled with the feeding tube. The combination of her stomach shrinking, her system not being used to nutrition and the food itself resulted in problems with the feeding tube. Dayna would feed and then be bloated with bouts of diarrhea and stomach discomfort. At this point she was down to 110 pounds.

We had a second telehealth conference with Dr. Shlomovitz and he agreed to set a surgical date upon receiving additional test results.

In August 2018 we changed the type of food Dayna was using in hopes she would feel better and be able to eat the required daily amount. So far, the change has been good and although she is still shy of the daily required amount, she is eating significantly more food that when she first started with the tube. While she hasn’t gained any weight since the food change, she has stabilized at 102 pounds.

In early September 2018 we received the surgical date — Oct. 24. We will head to Toronto on Oct. 21 with a pre-op consultation on Oct. 22. Dayna will spend the 24th in the hospital and will be released on the 25th. She will then have a post-op consulation on Oct. 30 with our return to Regina later that day. I will make the trip with Dayna. Again, this procedure is not a cure but we hope it will give Dayna some relief in her lifelong struggle with Achalasia.

Sask Health will cover the cost of the procedure, but we are responsible for the remaining costs such as air fares, accommodations and meals. The reason for this note is to update everyone on Dayna’s condition, not to ask for further financial support through Go Fund Me. We were overwhelmed and so thankful for the support Dayna received for the trip to Chicago.

This has been a very trying time for Dayna. Her hope is that this procedure will enable her to regain some semblance of a normal life where she is healthy enough to work, interact with friends and be a normal young woman.

Again, thank you for your love and support.

Here’s a link to a video that explains the POEM procedure — https://www.youtube.com/watch?v=KW0P2S5_6SU
+ Read More
So we’re back from Chicago and I’m happy to share some great news straight from Dr. Pandolfino’s mouth: “Dayna, I’m confident I can help you.”
After two days of tests and consultations, it appears Dayna DeDekker is a candidate for POEM (Peroral Endoscopic Myotomy), a surgical procedure that hopefully will relive the tightness in the esophagus and allow it to empty like it normally should to pass food into the stomach.
Dr. Pandolfino and the entire team at Northwestern Medical were wonderful. We were apprehensive going into the trip that Dayna might be just another number in such a large facility but the exact opposite was true. Everyone involved in her care was focused on doing whatever they could to make sure we could move forward with a positive result.
Of course all of this wouldn’t have been possible without the incredible support of family, friends and colleagues that enabled us to cover the financial details of the endeavour. We will be forever grateful to everyone who stepped forward to help because the reality is we wouldn’t have been able to meet the financial requirements on our own.
Dr. Pandolfino is currently meeting with the members of his team to finalize a plan to move forward and we expect to hear from him with the details in two weeks. If all goes according to plan, Dayna will be returning to Chicago for the POEM procedure.
Again, thanks to everyone who have helped us on this journey.
+ Read More
Wow...so thankful to all who have donated to Dayna's cause so far. Thank you for your support and generosity. ❤❤❤
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Read a Previous Update
Jeff DeDekker
27 months ago
1
1

Here's a video explaining the POEM procedure that hopefully Dayna will have in the near future. https://www.youtube.com/watch?v=oWp3pjhaJWo

+ Read More
Jeff
10 months ago

Before I begin this update, let me apologize for a couple of things. One, I apologize for the long delay between updates. The last 18 months have been hectic, busy, frustrating and emotionally draining as we’ve worked our way through a difficult health care system. And secondly, I apologize for the length of this update — a lot has happened in the past 18 months so be prepared for a long read. Okay, here we go . . . I took Dayna to Northwestern University Hospital in Chicago in March 2017 to see Dr. Pandolfino, who is recognized worldwide as an Achalasia expert. After a number of tests and a consultation, Dr. Pandolfino recommended that Dayna undergo a surgical procedure — Peroral Endoscopic Mytomy (POEM) — that would help Dayna. He stressed that the procedure would not cure me but would make a significant improvement to the quality of my life. That was the good news. The bad news was the procedure would cost $50,000 Cdn and since the procedure is done by a handful of surgeons in Canada, we could not get financial assistance from government health agencies to go back to Chicago. The next step was finding a surgeon in Canada who would perform the procedure for Dayna. This is where the road got a little harder for us there was no assistance provided by government health agencies with this search. Leanne and I took to the Internet to see if we could find a surgeon and in August 2017 we had a telehealth conference with a doctor from Kingston, Ont. After speaking with us and reviewing Dayna’s past tests, he decided that he would not perform the procedure, so we were back to Square One looking for another surgeon. During this time Dayna was struggling to eat and experiencing a great deal of pain from the condition — chest pain, back pain and spasms in her esophagus. Her G.I. doctor in Regina injected Botox into her esophagus but it provided no relief. In January 2018 we were able to get Dayna an appointment with a Thoracic Surgeon in Saskatoon as there are none in Regina. He was excellent but is not yet trained in the POEM procedure so there was nothing more he could do for her. Later that month we contacted Dr. Shlomovitz of the Toronto General Hospital and he agreed to a telehealth conference. After the discussion he agreed to perform the procedure, but he required a specific test here first. Dayna had the required test done in February, but we had to wait for 12 weeks for a doctor to read the results. The lengthy wait was because there is only one doctor in Regina available to read these specific test results which is extremely frustrating. In March 2018 we went back to the G.I. doctor to see if there were any further treatments he could suggest. He offered to try a dilation of the esophagus and out of desperation we agreed. At this point Dayna couldn’t keep any food down and struggled getting liquids down. Dayna got no relief from the dilation but her follow up with the doctor wasn’t until June. In April 2018 we contacted the thoracic surgeon in Saskatoon who previously saw Dayna in January and he booked her into a Saskatoon hospital. We went to Saskatoon and Dayna had a feeding tube inserted. The hope was that the procedure would allow Dayna to get proper nourishment. In May 2018 we had to send test results to Ontario and that took a month to get done. It was another frustrating delay. Initially Dayna struggled with the feeding tube. The combination of her stomach shrinking, her system not being used to nutrition and the food itself resulted in problems with the feeding tube. Dayna would feed and then be bloated with bouts of diarrhea and stomach discomfort. At this point she was down to 110 pounds. We had a second telehealth conference with Dr. Shlomovitz and he agreed to set a surgical date upon receiving additional test results. In August 2018 we changed the type of food Dayna was using in hopes she would feel better and be able to eat the required daily amount. So far, the change has been good and although she is still shy of the daily required amount, she is eating significantly more food that when she first started with the tube. While she hasn’t gained any weight since the food change, she has stabilized at 102 pounds. In early September 2018 we received the surgical date — Oct. 24. We will head to Toronto on Oct. 21 with a pre-op consultation on Oct. 22. Dayna will spend the 24th in the hospital and will be released on the 25th. She will then have a post-op consulation on Oct. 30 with our return to Regina later that day. I will make the trip with Dayna. Again, this procedure is not a cure but we hope it will give Dayna some relief in her lifelong struggle with Achalasia. Sask Health will cover the cost of the procedure, but we are responsible for the remaining costs such as air fares, accommodations and meals. The reason for this note is to update everyone on Dayna’s condition, not to ask for further financial support through Go Fund Me. We were overwhelmed and so thankful for the suppor

+ Read More
Jeff DeDekker
27 months ago

https://www.youtube.com/watch?v=oWp3pjhaJWo

+ Read More
Jeff DeDekker
28 months ago

So we’re back from Chicago and I’m happy to share some great news straight from Dr. Pandolfino’s mouth: “Dayna, I’m confident I can help you.” After two days of tests and consultations, it appears Dayna DeDekker is a candidate for POEM (Peroral Endoscopic Myotomy), a surgical procedure that hopefully will relive the tightness in the esophagus and allow it to empty like it normally should to pass food into the stomach. Although this surgery isn't a cure, it will definitely improve the quality of life for Dayna. Dr. Pandolfino and the entire team at Northwestern Medical were wonderful. We were apprehensive going into the trip that Dayna might be just another number in such a large facility but the exact opposite was true. Everyone involved in her care was focused on doing whatever they could to make sure we could move forward with a positive result. Of course all of this wouldn’t have been possible without the incredible support of family, friends and colleagues that enabled us to cover the financial details of the endeavour. We will be forever grateful to everyone who stepped forward to help because the reality is we wouldn’t have been able to meet the financial requirements on our own. Dr. Pandolfino is currently meeting with the members of his team to finalize a plan to move forward and we expect to hear from him with the details in two weeks. If all goes according to plan, Dayna will be returning to Chicago for the POEM procedure. Again, thanks to everyone who have helped us on this journey.

+ Read More
Dayna DeDekker
29 months ago

When this campaign started on Feb. 6, I wasn’t sure how it would go. I hoped the campaign would be a success but in all honesty I wasn’t very optimistic. But here we are 24 days later and the campaign fund has reached $10,495! I have also received $4,500 in donations made directly to me. While we’re still moving forward with the campaign, it has done well enough for me to confirm my appointment in Chicago. I can’t begin to tell you how much this support means to me. At times during this fight with Achalasia, I’ve felt alone but I certainly don’t feel that way anymore. The support I’ve received has been absolutely fabulous. I’ve heard from high school friends, former work colleagues of mine and work colleagues of my parents, family members and complete strangers. The love, kindness and generosity shown to me has almost been overwhelming. I can’t tell you how much all of this means to me, I can’t find the words to explain it. I’m heading to Chicago on Monday to meet with Dr. Pandolfino and I will post an update from the tests and consultation when I get back at the end of the week. Again, thank you, thank you, thank you for everything!

+ Read More
Jodie Marie White
29 months ago

I would like to help with any planning you have for a fundraiser. Back in 2007 my daughter was diagnosed with Neuroblastoma cancer. She is doing great now. The community came together so much for us and we are always still trying to help others as we were helped. Please message me if I can be of assistance in anyway. Praying for your family.

+ Read More
Jennifer Reynolds-Wells
29 months ago

Dayna I heard about you through a coworker that went to school with your aunt . I too suffer from achalasia. I'd love to follow your treatment and can be some Canadian support if you need more . Feel free to reach out!

+ Read More

$11,860 of $20,000 goal

Raised by 123 people in 29 months
Created February 6, 2017
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MS
$40
Marie Selensky
9 months ago
$20
Anonymous
9 months ago
JF
$50
Janice Fellner
10 months ago
SS
$20
Saskatchewan Sneakerheads
27 months ago
CD
$150
Cheryl and Jonathan Dawson
28 months ago
1
1
KZ
$50
Karen and Gerald Zimmer
28 months ago
1
1
AD
$25
Andrea Dacko
28 months ago
1
1
KD
$100
Kelly & Greg De Dekker
28 months ago
1
1
NP
$100
Nicole Pollock
28 months ago
1
1
Jeff DeDekker
27 months ago
1
1

Here's a video explaining the POEM procedure that hopefully Dayna will have in the near future. https://www.youtube.com/watch?v=oWp3pjhaJWo

+ Read More
Jeff
10 months ago

Before I begin this update, let me apologize for a couple of things. One, I apologize for the long delay between updates. The last 18 months have been hectic, busy, frustrating and emotionally draining as we’ve worked our way through a difficult health care system. And secondly, I apologize for the length of this update — a lot has happened in the past 18 months so be prepared for a long read. Okay, here we go . . . I took Dayna to Northwestern University Hospital in Chicago in March 2017 to see Dr. Pandolfino, who is recognized worldwide as an Achalasia expert. After a number of tests and a consultation, Dr. Pandolfino recommended that Dayna undergo a surgical procedure — Peroral Endoscopic Mytomy (POEM) — that would help Dayna. He stressed that the procedure would not cure me but would make a significant improvement to the quality of my life. That was the good news. The bad news was the procedure would cost $50,000 Cdn and since the procedure is done by a handful of surgeons in Canada, we could not get financial assistance from government health agencies to go back to Chicago. The next step was finding a surgeon in Canada who would perform the procedure for Dayna. This is where the road got a little harder for us there was no assistance provided by government health agencies with this search. Leanne and I took to the Internet to see if we could find a surgeon and in August 2017 we had a telehealth conference with a doctor from Kingston, Ont. After speaking with us and reviewing Dayna’s past tests, he decided that he would not perform the procedure, so we were back to Square One looking for another surgeon. During this time Dayna was struggling to eat and experiencing a great deal of pain from the condition — chest pain, back pain and spasms in her esophagus. Her G.I. doctor in Regina injected Botox into her esophagus but it provided no relief. In January 2018 we were able to get Dayna an appointment with a Thoracic Surgeon in Saskatoon as there are none in Regina. He was excellent but is not yet trained in the POEM procedure so there was nothing more he could do for her. Later that month we contacted Dr. Shlomovitz of the Toronto General Hospital and he agreed to a telehealth conference. After the discussion he agreed to perform the procedure, but he required a specific test here first. Dayna had the required test done in February, but we had to wait for 12 weeks for a doctor to read the results. The lengthy wait was because there is only one doctor in Regina available to read these specific test results which is extremely frustrating. In March 2018 we went back to the G.I. doctor to see if there were any further treatments he could suggest. He offered to try a dilation of the esophagus and out of desperation we agreed. At this point Dayna couldn’t keep any food down and struggled getting liquids down. Dayna got no relief from the dilation but her follow up with the doctor wasn’t until June. In April 2018 we contacted the thoracic surgeon in Saskatoon who previously saw Dayna in January and he booked her into a Saskatoon hospital. We went to Saskatoon and Dayna had a feeding tube inserted. The hope was that the procedure would allow Dayna to get proper nourishment. In May 2018 we had to send test results to Ontario and that took a month to get done. It was another frustrating delay. Initially Dayna struggled with the feeding tube. The combination of her stomach shrinking, her system not being used to nutrition and the food itself resulted in problems with the feeding tube. Dayna would feed and then be bloated with bouts of diarrhea and stomach discomfort. At this point she was down to 110 pounds. We had a second telehealth conference with Dr. Shlomovitz and he agreed to set a surgical date upon receiving additional test results. In August 2018 we changed the type of food Dayna was using in hopes she would feel better and be able to eat the required daily amount. So far, the change has been good and although she is still shy of the daily required amount, she is eating significantly more food that when she first started with the tube. While she hasn’t gained any weight since the food change, she has stabilized at 102 pounds. In early September 2018 we received the surgical date — Oct. 24. We will head to Toronto on Oct. 21 with a pre-op consultation on Oct. 22. Dayna will spend the 24th in the hospital and will be released on the 25th. She will then have a post-op consulation on Oct. 30 with our return to Regina later that day. I will make the trip with Dayna. Again, this procedure is not a cure but we hope it will give Dayna some relief in her lifelong struggle with Achalasia. Sask Health will cover the cost of the procedure, but we are responsible for the remaining costs such as air fares, accommodations and meals. The reason for this note is to update everyone on Dayna’s condition, not to ask for further financial support through Go Fund Me. We were overwhelmed and so thankful for the suppor

+ Read More
Jeff DeDekker
27 months ago

https://www.youtube.com/watch?v=oWp3pjhaJWo

+ Read More
Jeff DeDekker
28 months ago

So we’re back from Chicago and I’m happy to share some great news straight from Dr. Pandolfino’s mouth: “Dayna, I’m confident I can help you.” After two days of tests and consultations, it appears Dayna DeDekker is a candidate for POEM (Peroral Endoscopic Myotomy), a surgical procedure that hopefully will relive the tightness in the esophagus and allow it to empty like it normally should to pass food into the stomach. Although this surgery isn't a cure, it will definitely improve the quality of life for Dayna. Dr. Pandolfino and the entire team at Northwestern Medical were wonderful. We were apprehensive going into the trip that Dayna might be just another number in such a large facility but the exact opposite was true. Everyone involved in her care was focused on doing whatever they could to make sure we could move forward with a positive result. Of course all of this wouldn’t have been possible without the incredible support of family, friends and colleagues that enabled us to cover the financial details of the endeavour. We will be forever grateful to everyone who stepped forward to help because the reality is we wouldn’t have been able to meet the financial requirements on our own. Dr. Pandolfino is currently meeting with the members of his team to finalize a plan to move forward and we expect to hear from him with the details in two weeks. If all goes according to plan, Dayna will be returning to Chicago for the POEM procedure. Again, thanks to everyone who have helped us on this journey.

+ Read More
Dayna DeDekker
29 months ago

When this campaign started on Feb. 6, I wasn’t sure how it would go. I hoped the campaign would be a success but in all honesty I wasn’t very optimistic. But here we are 24 days later and the campaign fund has reached $10,495! I have also received $4,500 in donations made directly to me. While we’re still moving forward with the campaign, it has done well enough for me to confirm my appointment in Chicago. I can’t begin to tell you how much this support means to me. At times during this fight with Achalasia, I’ve felt alone but I certainly don’t feel that way anymore. The support I’ve received has been absolutely fabulous. I’ve heard from high school friends, former work colleagues of mine and work colleagues of my parents, family members and complete strangers. The love, kindness and generosity shown to me has almost been overwhelming. I can’t tell you how much all of this means to me, I can’t find the words to explain it. I’m heading to Chicago on Monday to meet with Dr. Pandolfino and I will post an update from the tests and consultation when I get back at the end of the week. Again, thank you, thank you, thank you for everything!

+ Read More
Jodie Marie White
29 months ago

I would like to help with any planning you have for a fundraiser. Back in 2007 my daughter was diagnosed with Neuroblastoma cancer. She is doing great now. The community came together so much for us and we are always still trying to help others as we were helped. Please message me if I can be of assistance in anyway. Praying for your family.

+ Read More
Jennifer Reynolds-Wells
29 months ago

Dayna I heard about you through a coworker that went to school with your aunt . I too suffer from achalasia. I'd love to follow your treatment and can be some Canadian support if you need more . Feel free to reach out!

+ Read More
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