Ayla's Medical Fund
Donation protected
Ayla needs your help!
History on Ayla’s Illness and Treatment:
Ayla Lynn Loyer was born July 20, 2010. On May of 2012 Ayla had developed the flu. When Jamie was getting Ayla ready for bed, she noticed swelling around her eyes. Only a short 30 minutes later Ayla was so swollen she could not open her eyes. Jamie then rushed Ayla to the hospital; however, the doctors had no idea as to what was causing the swelling. Some doctors concluded it was just from the fever and would go away with time. Luckily Ayla and Jamie were flying to Calgary to visit her family the next day. The entire trip in Calgary was spent with nephrologists and dieticians. After they came to a diagnosis, Ayla was given prednisone and they went back home to the Yukon; where there is little knowledge about this chronic illness. Jamie then spent most of her time reiterating to the Yukon doctors what the specialists in Calgary had communicated to her about Ayla’s condition. Ayla continued to relapse while on the prednisone. Her relapses became so close together that Ayla was given a cancer related drug intended to help "reboot" her immune system. This drug required weekly bloodwork which consequently also required Ayla and Jamie to stay in Calgary for a month where they could be closely monitored by specialists. Ayla was then given cyclophosphamide; due to swelling and discomfort Jamie had to quit her job to stay in Calgary with Ayla during the treatments. After this treatment Ayla was then given tacrolimus which resulted in her bloodwork being closely monitored biweekly. Ayla is now taking Tacrolimus, and has been bouncing in and out of remission for over two years now. There are many side effects to all the drugs that Ayla has been given however; all the side effects are not as bad as the alternative: dialysis and kidney failure.
A bit on Nephrotic Syndrome:
Nephrotic Syndrome is a chronic disease with a group of symptoms that indicate kidney damage, consequently allowing the body to release too much of the bodies needed protein into the urine. Your kidneys act as a filtering agent filtering fluids in the body and sending needed minerals back into the bloodstream. Nephrotic Syndrome patients have damage to the kidneys primarily where the blood is being filtered. This causes the body to release many of the needed proteins into the urine. Ayla is currently diagnosed with having Minimum Change Disease. When Ayla relapses her kidneys excrete protein making her body unable to properly dispose of its fluid resulting in painful swelling. She is also more susceptible to infections due to the immune suppressant medication prescribed to patients with this chronic disease. Blood clots are also more likely to develop due to the loss of proteins in the urine. High blood cholesterol also albumin leaks into the urine making the levels drop in the blood.
Most children with Primary Nephrotic Syndrome take control of their immune system through the medication of corticosteroids. This decreases the amount of albumin lost in the urine and also controls and decreases the swelling. 90% of children achieve remission with this treatment with little relapse; however, Ayla has not been responding to the corticosteroids, and the doctors are now concerned that she is the 10%. Normally children with this disease go in and out of remission eventually recovering without long term kidney damage. Ayla unfortunately is not staying in remission leading the doctors to become concerned that she may not ever grow out of this.
Why Jamie needs your help:
Because Ayla has Nephrotic Syndrome she needs to have a very strict diet limiting sodium, reducing the amount of liquids she intakes, and eating foods low in saturated fat and cholesterol. She also must eat organic food which is an expense itself especially when in the Yukon. When Ayla has an episode she needs to be flown to The Children’s Hospital where there are specialists that deal primarily with Nephrotic Syndrome. This is another very expensive trip as Ayla and Jamie need flights, organic healthy food, lodging, rental vehicles and medicine. Although the government covers some of the cost, it is not enough. Jamie also has to stop her schooling and/or work in order to tend to Ayla’s needs when applicable. Ayla’s condition makes it impossible for her to attend day dare, or any other social interactive environment. This is due to her weakened immune system from immune suppressant medication. Jamie has limited support in the Yukon as most of her family resides in New Brunswick. This makes it particularly hard for Jamie as not only does she not have financial support from her family, but she does not have emotional or physical support. Jamie and Ayla are very much isolated, financially broke, and physically and emotionally exhausted.
For those of you who do not know Jamie Thomas she is a single parent who lives in assisted living. Her bank account is currently in overdraft, and she is still in Edmonton and needs to get home. Jamie is a student with one sick little girl, and due to the climate in the Yukon she is subjected to only having seasonal employment. Jamie is also in school finishing up her Environmental Science Degree with a student loan debt of 38,000.
So why does she need your help now?
For a start the doctors need to do a kidney biopsy on Ayla to determine what shape her kidneys are in. They need to know if she will grow out of her condition or if it is a lifelong illness. Ayla has exhausted every treatment option for Nephrotic Syndrome, and her condition is still worsening forcing her to relapse more frequently. The doctors need to perform a biopsy to find out why she is not responding to treatment. Jamie and Ayla will need to stay, or return, to Edmonton until Ayla is in remission so they can do a biopsy. This costs money that Jamie does not have, but it is imperative that this biopsy happen in a relatively timely manner to ensure the doctors can further help Ayla.
The money you donate will not only help a family in desperate need of financial assistance, but it will also allow for Ayla to have a more positive experience while battling this illness. Financial aid will help Jamie focus her energy towards remaining positive for her little girl, instead of dwelling on unpaid bills that need immediate attention.
Thank you from Ayla, Jamie, and all of her family!
History on Ayla’s Illness and Treatment:
Ayla Lynn Loyer was born July 20, 2010. On May of 2012 Ayla had developed the flu. When Jamie was getting Ayla ready for bed, she noticed swelling around her eyes. Only a short 30 minutes later Ayla was so swollen she could not open her eyes. Jamie then rushed Ayla to the hospital; however, the doctors had no idea as to what was causing the swelling. Some doctors concluded it was just from the fever and would go away with time. Luckily Ayla and Jamie were flying to Calgary to visit her family the next day. The entire trip in Calgary was spent with nephrologists and dieticians. After they came to a diagnosis, Ayla was given prednisone and they went back home to the Yukon; where there is little knowledge about this chronic illness. Jamie then spent most of her time reiterating to the Yukon doctors what the specialists in Calgary had communicated to her about Ayla’s condition. Ayla continued to relapse while on the prednisone. Her relapses became so close together that Ayla was given a cancer related drug intended to help "reboot" her immune system. This drug required weekly bloodwork which consequently also required Ayla and Jamie to stay in Calgary for a month where they could be closely monitored by specialists. Ayla was then given cyclophosphamide; due to swelling and discomfort Jamie had to quit her job to stay in Calgary with Ayla during the treatments. After this treatment Ayla was then given tacrolimus which resulted in her bloodwork being closely monitored biweekly. Ayla is now taking Tacrolimus, and has been bouncing in and out of remission for over two years now. There are many side effects to all the drugs that Ayla has been given however; all the side effects are not as bad as the alternative: dialysis and kidney failure.
A bit on Nephrotic Syndrome:
Nephrotic Syndrome is a chronic disease with a group of symptoms that indicate kidney damage, consequently allowing the body to release too much of the bodies needed protein into the urine. Your kidneys act as a filtering agent filtering fluids in the body and sending needed minerals back into the bloodstream. Nephrotic Syndrome patients have damage to the kidneys primarily where the blood is being filtered. This causes the body to release many of the needed proteins into the urine. Ayla is currently diagnosed with having Minimum Change Disease. When Ayla relapses her kidneys excrete protein making her body unable to properly dispose of its fluid resulting in painful swelling. She is also more susceptible to infections due to the immune suppressant medication prescribed to patients with this chronic disease. Blood clots are also more likely to develop due to the loss of proteins in the urine. High blood cholesterol also albumin leaks into the urine making the levels drop in the blood.
Most children with Primary Nephrotic Syndrome take control of their immune system through the medication of corticosteroids. This decreases the amount of albumin lost in the urine and also controls and decreases the swelling. 90% of children achieve remission with this treatment with little relapse; however, Ayla has not been responding to the corticosteroids, and the doctors are now concerned that she is the 10%. Normally children with this disease go in and out of remission eventually recovering without long term kidney damage. Ayla unfortunately is not staying in remission leading the doctors to become concerned that she may not ever grow out of this.
Why Jamie needs your help:
Because Ayla has Nephrotic Syndrome she needs to have a very strict diet limiting sodium, reducing the amount of liquids she intakes, and eating foods low in saturated fat and cholesterol. She also must eat organic food which is an expense itself especially when in the Yukon. When Ayla has an episode she needs to be flown to The Children’s Hospital where there are specialists that deal primarily with Nephrotic Syndrome. This is another very expensive trip as Ayla and Jamie need flights, organic healthy food, lodging, rental vehicles and medicine. Although the government covers some of the cost, it is not enough. Jamie also has to stop her schooling and/or work in order to tend to Ayla’s needs when applicable. Ayla’s condition makes it impossible for her to attend day dare, or any other social interactive environment. This is due to her weakened immune system from immune suppressant medication. Jamie has limited support in the Yukon as most of her family resides in New Brunswick. This makes it particularly hard for Jamie as not only does she not have financial support from her family, but she does not have emotional or physical support. Jamie and Ayla are very much isolated, financially broke, and physically and emotionally exhausted.
For those of you who do not know Jamie Thomas she is a single parent who lives in assisted living. Her bank account is currently in overdraft, and she is still in Edmonton and needs to get home. Jamie is a student with one sick little girl, and due to the climate in the Yukon she is subjected to only having seasonal employment. Jamie is also in school finishing up her Environmental Science Degree with a student loan debt of 38,000.
So why does she need your help now?
For a start the doctors need to do a kidney biopsy on Ayla to determine what shape her kidneys are in. They need to know if she will grow out of her condition or if it is a lifelong illness. Ayla has exhausted every treatment option for Nephrotic Syndrome, and her condition is still worsening forcing her to relapse more frequently. The doctors need to perform a biopsy to find out why she is not responding to treatment. Jamie and Ayla will need to stay, or return, to Edmonton until Ayla is in remission so they can do a biopsy. This costs money that Jamie does not have, but it is imperative that this biopsy happen in a relatively timely manner to ensure the doctors can further help Ayla.
The money you donate will not only help a family in desperate need of financial assistance, but it will also allow for Ayla to have a more positive experience while battling this illness. Financial aid will help Jamie focus her energy towards remaining positive for her little girl, instead of dwelling on unpaid bills that need immediate attention.
Thank you from Ayla, Jamie, and all of her family!
Organizer
Mandy Maillet
Organizer
Fredericton, NB