Aiden's Medical and Funeral Costs
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Aiden’s Story
Welcome to Aiden’s Medical Fundraising Site.
Aiden was born March 30, 2014, at a healthy 8 lb 10 oz, in Maple Grove, MN. Big beautiful blue eyes and a smile that will light up any room.
Aiden was a typical, healthy baby from the first 8 months of life. Our family had many amazing experiences, whether it be his first boat ride at the cabin, the many trips to the zoo or dad playing Santa at his Montessori School. He was also doing those things that all kids start to develop- sitting, crawling and pulling himself up to a standing position.
In early January 2015 Aiden started experiencing some sickness. At first it was an ear infection, then teething and other small things that most children experience over their first winter in Minnesota. Aiden then started experiencing a severe case of vomiting most morning which caused for additional alarm.
In mid-February we noticed Aiden not wanting to crawl and was not the happy baby that we all came to know and love. We brought him back to the doctor’s officeMarch 23rd and discovered that he had a double ear infection and our new pediatrician referred us immediately to a neurologist as she had concerns with his overall health and muscle weakness.
This started our journey of neurologist visits, bloodwork and specialty care. The bloodwork revealed Aiden has an elevated CK Enzyme level and Lactate Acid level in hisblood. The elevated CK Enzyme level is attributed to muscle breakdown and the Lactate Acid is usually associated witha metabolic condition, typically with something called the Mitochondria.
We threw a huge birthday party to celebrate Aiden turning 1. We were surrounded by many friends and family, and had a blast. At the same time, Aiden was battling a double ear-infection. After a 3 week battle, we found ourselves at Children’s Hospital due to sever vomiting, which lead to dehydration and low blood sugars. After a three day stay, Aiden was able to shake the ear-infections and we ventured home.
The first week back home was great and Aiden seemed almost back to his old self again. We started doing physical therapy and occupational therapy with a goal of slowly getting his strength and muscle back.
By mid-May, Aiden was on a downward path again, struggling to sit, a weak neck and struggling to control his head. On May 22nd, after a long drive to the cabin, Aiden was again vomiting and had a high fever. On Saturday, May 23rd we decided it was time to make the drive back to Minneapolis and bring him to Children’s Hospital where we knew he would be safe and get the care he needed.
Upon admission, we discovered Aiden had strep throat and his blood sugar was again low. Children’s was able to get his blood sugar stabilized after a few days and we headed home to see if he was able to eat enough calories.
The week after leaving the hospital we continuined to count Aiden's calorie in-take each day. On his best days he can eat about 900 calories per day. On his bad days it has been more like 700. Overall he had averaged about 790 calories/day. Our goal for Aiden should be 1,000 calories per day since he hasn't put on any weight since January, so he needs to do some catching up.
Armed with this information we made the difficult decision to proceed with the feeding tube last Thursday June, 11th. While it was heartbreaking to think about putting him back in the hospital and through more pain after he has been through so much in the past 6 months; however, we know it was for the his best interests.
The surgery went well and we started using the G-tube slowly. He responded well when getting his food continuously at a very slow rate. We increased the rate slightly and he started having issues with vomiting and spitting up that we've been trying to figure out since. We are going to try and utilize the J-tube, which feeds food directly into the small intestine. We hope that bypassing the stomach will help control his vomiting.
With his weakening muscles, he is starting to have a hard time clearing his throat. In the past few days he has started getting vomit and spit stuck in the back of his throat, which has required us to use suction equipment to make sure his airway is staying clear. Between the vomiting and difficulty coughing, the concern was that he will start getting food into his lungs which puts him at risk for respiratory illnesses.
Over the weekend we also received the genetic metabolic panel back, and it confirmed the working diagnosis. The official name of the disease is Mitochondria DNA Depletion Syndrome 2. As the mitochondria is what produces energy in the body. There are 50 or 60 different genes that make up the DNA structure within the mitochondria. There are two copies of each gene, one from each parent.
The panel confirmed both copies of one of these genes are mutated, which keeps the cell from working correctly. Aiden is the 46th confirmed case of this exact disease ever recorded in the world. Because it is so rare, there is not a lot known about the disease and there are no known cures.
Our doctors do believe he has a severe case as it appeared so quickly and so early in life and that we may have a few months with Aiden.
There are a couple of ongoing clinical trials for medications that may help. These trials are new enough that we are unsure if we could obtain FDA approval to to try them with Aiden. Our team continues to find out more information to better understand these clinical trials as well as follow up with other mitochondria experts across the country.
While in th hospital Aiden continued to experience heavy spit build-up in his throat which was making breathing difficult. While trying to suction his throat he vomited, some of which went into his lungs.
We tried multiple things to better his breathing including oxygen support, anti-inflammatory medications, increased uses of his nebulizer and a cough assist machine.
His lung infection has continued to get worse, which caused a blockage in his left lung. The blockage put Aiden into respiratory failure. The amazing doctors were able to get Aiden stable, but unfortunately he doesn't have the muscle strength to continue to fight this terrible disease.
On Thursday June 19 a week after going to the hospital for the feeding tube, the disease took his strength from everywhere but his heart, brain and soul. He was able to overcome Wednesday's respiratory failure to give us 24 precious hours. These were some of the most challenging, yet calming 24 hours of our lives. Even in such difficult times, he held on for our family.
This 24 hours allowed Jackie to see him one last time. He opened his eyes just to make sure it was really her.
This 24 hours allowed our families to come together to mourn, reminisce and say our goodbyes. As the day grew later there was an overwhelming sense of calm surrounding him. Briana and I both knew our time with Aiden was drawing short.
With mom snuggling next to him and dad combing his hair, we told him he didn't need to hold on for us anymore. We also told him we were ready. He took one last deep breath and let go.
Many following on this site know Aiden, but others didn't have the privilege of meeting our baby. Our baby was bigger than himself, always brightening the world of those surrounding him. That is exactly what he did those last 24 hours and the rest of the 14 months we shared with him. We are all better people because of Aiden.
This site was created to generate funds to help suppport Nick and Briana with medical costs and anything else raised will be donated to Mitochondrial research to futher the science and help find a cure for this disease.
Welcome to Aiden’s Medical Fundraising Site.
Aiden was born March 30, 2014, at a healthy 8 lb 10 oz, in Maple Grove, MN. Big beautiful blue eyes and a smile that will light up any room.
Aiden was a typical, healthy baby from the first 8 months of life. Our family had many amazing experiences, whether it be his first boat ride at the cabin, the many trips to the zoo or dad playing Santa at his Montessori School. He was also doing those things that all kids start to develop- sitting, crawling and pulling himself up to a standing position.
In early January 2015 Aiden started experiencing some sickness. At first it was an ear infection, then teething and other small things that most children experience over their first winter in Minnesota. Aiden then started experiencing a severe case of vomiting most morning which caused for additional alarm.
In mid-February we noticed Aiden not wanting to crawl and was not the happy baby that we all came to know and love. We brought him back to the doctor’s officeMarch 23rd and discovered that he had a double ear infection and our new pediatrician referred us immediately to a neurologist as she had concerns with his overall health and muscle weakness.
This started our journey of neurologist visits, bloodwork and specialty care. The bloodwork revealed Aiden has an elevated CK Enzyme level and Lactate Acid level in hisblood. The elevated CK Enzyme level is attributed to muscle breakdown and the Lactate Acid is usually associated witha metabolic condition, typically with something called the Mitochondria.
We threw a huge birthday party to celebrate Aiden turning 1. We were surrounded by many friends and family, and had a blast. At the same time, Aiden was battling a double ear-infection. After a 3 week battle, we found ourselves at Children’s Hospital due to sever vomiting, which lead to dehydration and low blood sugars. After a three day stay, Aiden was able to shake the ear-infections and we ventured home.
The first week back home was great and Aiden seemed almost back to his old self again. We started doing physical therapy and occupational therapy with a goal of slowly getting his strength and muscle back.
By mid-May, Aiden was on a downward path again, struggling to sit, a weak neck and struggling to control his head. On May 22nd, after a long drive to the cabin, Aiden was again vomiting and had a high fever. On Saturday, May 23rd we decided it was time to make the drive back to Minneapolis and bring him to Children’s Hospital where we knew he would be safe and get the care he needed.
Upon admission, we discovered Aiden had strep throat and his blood sugar was again low. Children’s was able to get his blood sugar stabilized after a few days and we headed home to see if he was able to eat enough calories.
The week after leaving the hospital we continuined to count Aiden's calorie in-take each day. On his best days he can eat about 900 calories per day. On his bad days it has been more like 700. Overall he had averaged about 790 calories/day. Our goal for Aiden should be 1,000 calories per day since he hasn't put on any weight since January, so he needs to do some catching up.
Armed with this information we made the difficult decision to proceed with the feeding tube last Thursday June, 11th. While it was heartbreaking to think about putting him back in the hospital and through more pain after he has been through so much in the past 6 months; however, we know it was for the his best interests.
The surgery went well and we started using the G-tube slowly. He responded well when getting his food continuously at a very slow rate. We increased the rate slightly and he started having issues with vomiting and spitting up that we've been trying to figure out since. We are going to try and utilize the J-tube, which feeds food directly into the small intestine. We hope that bypassing the stomach will help control his vomiting.
With his weakening muscles, he is starting to have a hard time clearing his throat. In the past few days he has started getting vomit and spit stuck in the back of his throat, which has required us to use suction equipment to make sure his airway is staying clear. Between the vomiting and difficulty coughing, the concern was that he will start getting food into his lungs which puts him at risk for respiratory illnesses.
Over the weekend we also received the genetic metabolic panel back, and it confirmed the working diagnosis. The official name of the disease is Mitochondria DNA Depletion Syndrome 2. As the mitochondria is what produces energy in the body. There are 50 or 60 different genes that make up the DNA structure within the mitochondria. There are two copies of each gene, one from each parent.
The panel confirmed both copies of one of these genes are mutated, which keeps the cell from working correctly. Aiden is the 46th confirmed case of this exact disease ever recorded in the world. Because it is so rare, there is not a lot known about the disease and there are no known cures.
Our doctors do believe he has a severe case as it appeared so quickly and so early in life and that we may have a few months with Aiden.
There are a couple of ongoing clinical trials for medications that may help. These trials are new enough that we are unsure if we could obtain FDA approval to to try them with Aiden. Our team continues to find out more information to better understand these clinical trials as well as follow up with other mitochondria experts across the country.
While in th hospital Aiden continued to experience heavy spit build-up in his throat which was making breathing difficult. While trying to suction his throat he vomited, some of which went into his lungs.
We tried multiple things to better his breathing including oxygen support, anti-inflammatory medications, increased uses of his nebulizer and a cough assist machine.
His lung infection has continued to get worse, which caused a blockage in his left lung. The blockage put Aiden into respiratory failure. The amazing doctors were able to get Aiden stable, but unfortunately he doesn't have the muscle strength to continue to fight this terrible disease.
On Thursday June 19 a week after going to the hospital for the feeding tube, the disease took his strength from everywhere but his heart, brain and soul. He was able to overcome Wednesday's respiratory failure to give us 24 precious hours. These were some of the most challenging, yet calming 24 hours of our lives. Even in such difficult times, he held on for our family.
This 24 hours allowed Jackie to see him one last time. He opened his eyes just to make sure it was really her.
This 24 hours allowed our families to come together to mourn, reminisce and say our goodbyes. As the day grew later there was an overwhelming sense of calm surrounding him. Briana and I both knew our time with Aiden was drawing short.
With mom snuggling next to him and dad combing his hair, we told him he didn't need to hold on for us anymore. We also told him we were ready. He took one last deep breath and let go.
Many following on this site know Aiden, but others didn't have the privilege of meeting our baby. Our baby was bigger than himself, always brightening the world of those surrounding him. That is exactly what he did those last 24 hours and the rest of the 14 months we shared with him. We are all better people because of Aiden.
This site was created to generate funds to help suppport Nick and Briana with medical costs and anything else raised will be donated to Mitochondrial research to futher the science and help find a cure for this disease.
Organizer and beneficiary
Briana Koch
Organizer
Minneapolis, MN
Grace Biggs
Beneficiary