Family Struggle
I am setting up this Go Fund Me account for my brother and his family. He has a wife and three kids, his youngest was born on December 23, 2014. He was born with a lot of medical problems, this is his story.
A short time prior to Rylan being born we were notified that he had a congenital diaphragmatic hernia (CDH). There were a lot of unknowns regarding the severity. The national average for survival is 65%.
After Rylan was born he was rushed to the NICU and placed on a high frequency oscillatory ventilator. Test where run and came back showing Rylan’s lungs were being squished and his heart was being pushed to the right. His stomach, intestines, and bowls had gone through the hernia. The surgeon said he would have surgery as soon as the surgeon felt it “safe”. They wanted to give him at least a few days before proceeding with the surgery. He was born on a Monday and by Friday was going in for surgery. The surgery was a success but due to the amount of pressure from his organs pressing on his lungs and heart we were warned there was a good chance he’d go home on oxygen and they expected him to be in the NICU till he was around 2 ½ months old. His lungs were not fully developed his right side was estimated at 80% while the left lung at 30% so he remained on oxygen support. About a week after surgery he had his first episode of SVT supraventricular tachycardia. His heart rate would be between 300 and 340. After the first episode he had about 6 more episodes in a 24 hour period. With the right medication we’re luckily able to control his heart rate and pray he grows out of it. Needless to say his stay in the NICU was a roller-coaster of events and emotions. He did however prove very resilient and would continually pull out/take off his breathing support devises when he was around a month old. He seemed to think he didn’t need them. Watching him you could see how hard it was to breath on his own but he kept trying. Around a 1 ½ months he surprised the Doctors with his resilience and enthusiasm to be a normal kid that they let him go home a month earlier than expected and without oxygen support, but of course with constant follow up appointments.
He had been home for a week when we noticed he seemed to be in a lot of pain. We took him to a general pediatrician and were told he was ok just fussy and probably had a sensitive stomach to something he was getting in the breast milk. Two weeks went by and he continued to be in distressed, he was then seen by his surgeon. She was extremely concerned so he was readmitted for another week while test were run. They were not able to decipher the problem at the time but were worried about his weight and stool. He was referred to a Gastroenterology specialist. The specialist saw him every 10 days for about two months and still sees him once a month. After multiple visits he was diagnosed with an extreme sensitivity to dairy and soy and is on a special formula that cost around $50 a can (3 day supply). The dairy and soy were the culprits for the pain problems but we still are searching for the cause for his lack of weight gain. He is currently in the 2 percentile for weight, which is an improvement!
At five months we were hopeful that we were heading in the right direction when one day while sleeping he stopped breathing. He would gasp for air and then stop breathing for 20 to 30 seconds and then start gasping for air again. He was rushed to the nearest hospital and from there transferred to a hospital with better pediatric services. During that stay they were concerned he might be having seizures but after an EEG and constant monitoring they sent us home when the test(s) came back negative. Since then he has had an episode at least once a week, he is now 6 ½ months. He’s been referred to a sleep specialist whom he’ll see in about a week and a half. He’s now up to 6 doctors that he’s seeing and estimated has spent at least half of his life in the hospital either admitted or spending the day there for testing and follow up appointments. Throughout everything Rylan has continued to smile and remind us how precious life is.
In result of all of this, my brother is now working four jobs to take care of his family, he also donates plasma every chance he can. He is also in the army reserves. His is not active in the army, he is unable to go active. He is lucky if he gets a few hours of sleep a day. His wife has a disability and can not work, that leaves my brother to take care of her and his three sons and ALL of the bills/living costs. To make matters worse, he was recently diagnosed with a hernia and was put on restricted work. He will most likely have to have surgery.They needed 12,000 dollars to save their home and they were not able to come up with the money they needed to save their home and now they need to move. So instead of trying to get the money to save their home, I am asking for the money to help get them into a new home. On top of all that, they have $500 in medical bills every month that they can not pay. My brother is losing hope and it breaks my heart. We are praying for a miracle. I know that is a lot of money to ask for, but there is nothing else we can. I don't want to see my brother and his family homeless.
I am very thankful to everyone who donates. It means the world to me and my family.
A short time prior to Rylan being born we were notified that he had a congenital diaphragmatic hernia (CDH). There were a lot of unknowns regarding the severity. The national average for survival is 65%.
After Rylan was born he was rushed to the NICU and placed on a high frequency oscillatory ventilator. Test where run and came back showing Rylan’s lungs were being squished and his heart was being pushed to the right. His stomach, intestines, and bowls had gone through the hernia. The surgeon said he would have surgery as soon as the surgeon felt it “safe”. They wanted to give him at least a few days before proceeding with the surgery. He was born on a Monday and by Friday was going in for surgery. The surgery was a success but due to the amount of pressure from his organs pressing on his lungs and heart we were warned there was a good chance he’d go home on oxygen and they expected him to be in the NICU till he was around 2 ½ months old. His lungs were not fully developed his right side was estimated at 80% while the left lung at 30% so he remained on oxygen support. About a week after surgery he had his first episode of SVT supraventricular tachycardia. His heart rate would be between 300 and 340. After the first episode he had about 6 more episodes in a 24 hour period. With the right medication we’re luckily able to control his heart rate and pray he grows out of it. Needless to say his stay in the NICU was a roller-coaster of events and emotions. He did however prove very resilient and would continually pull out/take off his breathing support devises when he was around a month old. He seemed to think he didn’t need them. Watching him you could see how hard it was to breath on his own but he kept trying. Around a 1 ½ months he surprised the Doctors with his resilience and enthusiasm to be a normal kid that they let him go home a month earlier than expected and without oxygen support, but of course with constant follow up appointments.
He had been home for a week when we noticed he seemed to be in a lot of pain. We took him to a general pediatrician and were told he was ok just fussy and probably had a sensitive stomach to something he was getting in the breast milk. Two weeks went by and he continued to be in distressed, he was then seen by his surgeon. She was extremely concerned so he was readmitted for another week while test were run. They were not able to decipher the problem at the time but were worried about his weight and stool. He was referred to a Gastroenterology specialist. The specialist saw him every 10 days for about two months and still sees him once a month. After multiple visits he was diagnosed with an extreme sensitivity to dairy and soy and is on a special formula that cost around $50 a can (3 day supply). The dairy and soy were the culprits for the pain problems but we still are searching for the cause for his lack of weight gain. He is currently in the 2 percentile for weight, which is an improvement!
At five months we were hopeful that we were heading in the right direction when one day while sleeping he stopped breathing. He would gasp for air and then stop breathing for 20 to 30 seconds and then start gasping for air again. He was rushed to the nearest hospital and from there transferred to a hospital with better pediatric services. During that stay they were concerned he might be having seizures but after an EEG and constant monitoring they sent us home when the test(s) came back negative. Since then he has had an episode at least once a week, he is now 6 ½ months. He’s been referred to a sleep specialist whom he’ll see in about a week and a half. He’s now up to 6 doctors that he’s seeing and estimated has spent at least half of his life in the hospital either admitted or spending the day there for testing and follow up appointments. Throughout everything Rylan has continued to smile and remind us how precious life is.
In result of all of this, my brother is now working four jobs to take care of his family, he also donates plasma every chance he can. He is also in the army reserves. His is not active in the army, he is unable to go active. He is lucky if he gets a few hours of sleep a day. His wife has a disability and can not work, that leaves my brother to take care of her and his three sons and ALL of the bills/living costs. To make matters worse, he was recently diagnosed with a hernia and was put on restricted work. He will most likely have to have surgery.They needed 12,000 dollars to save their home and they were not able to come up with the money they needed to save their home and now they need to move. So instead of trying to get the money to save their home, I am asking for the money to help get them into a new home. On top of all that, they have $500 in medical bills every month that they can not pay. My brother is losing hope and it breaks my heart. We are praying for a miracle. I know that is a lot of money to ask for, but there is nothing else we can. I don't want to see my brother and his family homeless.
I am very thankful to everyone who donates. It means the world to me and my family.
Organizer
Kayla Owen
Organizer
Federal Way, WA