Merrick's Journey
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The Only Disability In Life, Is A Bad Attitude!
UPDATE 4/22/2015 : Orignally this account was set up to help us travel to Florida for our sons conference for his syndrome 1p36 however Merrick has recently had several visits to the hospital including surgery, 4 Days of being admitted, 3 emergency nurse calls to our home, and followed today with a Merrick's picc line coming out causing him to be transported by ambulance. Our daughter has also had a few visits to the hospital due to allergic reactions so we are going to be pounded with medical bills. If you can help anything would be appreciated if not able to give donation please share to your page.
Hello my name is Carina and I am the mother of Merrick (aka Booger, Chicken Nugget, or small fry) who is 6 years old. Merrick was born on May 11th which was Mother's Day! What better gift can you get than to becoming a mother. My husband and I were so excited for his arrival all the ultrasounds looked great doctor perdicted he would be a 9-10lb healthy baby.... On May 10th my water broke, we were so excited that today was the day we'd become parents! Labor was good... that was until the last 45 minutes when I thought my heart was going to stop as I watched my sons heart beat flat line on the monitor next to me. Nurses and doctors were calling in specialist, trying to decide to take me c-section yet didnt have time so they had me push for several mins and then his birth happened so fast. I waited for this day to hold my baby yet that didnt happen! When Merrick was born the cord was wrapped around his neck and he was not breathing. I couldn't see what the doctors were doing rather hearing everyone working to do everything in the power to get my little man to breathe. Merrick was born at 6lbs which was not close to what was expected, Merrick did take a tiny breath in our room and then was rushed away to be cared for. A few hours later he had returned for just a moment when my husband and I noticed he was shaking, the doctors then rushed him into the NICU where doctors went back and fourth on whether it was a seizure and was not sure if he was strong enough to fight for his life. Merrick had a blood pool on his brain do to them trying to get him out of the birth canal quickly. A corrective helmet was required as his skull had calsified where the blood was sitting. Merrick's brain eventually started to grow up into the hole as the blood drained causing more issues than ever expected. Leaving us to fight with insurance again! We knew when he was released from the hospital this was just he beginning, We were toldMerrick might not live past the age of 1, then 2 and a G tube was placed in his stomach to help get him extra calories and to help gain weight, that did not work and at 3 years old was told his kidneys and liver had no room to grow and were pushing his intestines up into his stomach. Merrick never gained an ounce while being on a feeding tube as it made him throw up during feedings, and excessive bawl movements. So Kris and I decided to remove his feeding tube and left it in Gods hands. It wasn't until 4 years ago that Merrick was in the hospital again fighting for his life due to getting RSV which he had multipul times due to a low immuine system. While in the hospital I requested what is called a FISH test. In doing my research online I found your child would have to be hospitalized in order for insurance to pay for the cost as it is around $25K out of pocket.This test is taken by blood work and sent to a lab where each chromosone is broken down one by one until they find the breaks. Merricks is 1p36.32 with 31 oligoncleotides are deleted. (I am sure nobody will understand that!) =)
Of course we had to fight with insurance to pay and show a cause why it was requested and needed. Merrick's test results came back with a rare syndrome in which is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. My family was in shock, yet relieved to know that the doctors would not be pulling several tubes of blood to narrow down all the possiblities of what "could be". The doctors were not aware of this syndrome so we immed. started to research on the internet, searched for other families to help with unanswered question and could help us educate the doctors to get him the best care. Merrick is a strong fighter and continues to prove doctor after doctor wrong when they say he "can't or "won't". In the past year several other children with the same syndrome have lost their fight, we know there will come a day for Merrick and we try to live each day to the fullest and give him the best life we can. In July we have an opportunity to fly out to Orlando Florida with Merrick to meet other children, specialist, doctors and families all suffering from this disease. This is an chance to get answers and be with those that understand each day what we go through. We also will have the chance to go to Disney World! Merrick has a HUGE love for Mickey mouse and roller coasters however due to excessive medical bills, medications, and just having a baby we are way short on funds for flights, hotel, food, a rental car etc.. We are also trying to do fundraisers to help make this happen. We just dont know how much longer Merrick will be with us and want to provide him the best oppurnities we can as parents. Each day is a blessing we have with him. Merrick is so kind hearted, loves everyone he comes in contact, and thinks everyone is his Amma (grandma), he has a passion for trains, buses, school, monsters inc and signing time. I want nothing more than to see my child experience what other children have each day! If you can help in anyway we would be greatly appreciative. We understand not everyone can help with donations so if you could share that is all we ask! Thank you from the bottom of our hearts and God Bless!
The Kinser's
Merrick, Nyla-Rae, Carina and Kris
To learn more about Merricks syndrome please visithttp://www.1p36dsa.org
UPDATE 4/22/2015 : Orignally this account was set up to help us travel to Florida for our sons conference for his syndrome 1p36 however Merrick has recently had several visits to the hospital including surgery, 4 Days of being admitted, 3 emergency nurse calls to our home, and followed today with a Merrick's picc line coming out causing him to be transported by ambulance. Our daughter has also had a few visits to the hospital due to allergic reactions so we are going to be pounded with medical bills. If you can help anything would be appreciated if not able to give donation please share to your page.
Hello my name is Carina and I am the mother of Merrick (aka Booger, Chicken Nugget, or small fry) who is 6 years old. Merrick was born on May 11th which was Mother's Day! What better gift can you get than to becoming a mother. My husband and I were so excited for his arrival all the ultrasounds looked great doctor perdicted he would be a 9-10lb healthy baby.... On May 10th my water broke, we were so excited that today was the day we'd become parents! Labor was good... that was until the last 45 minutes when I thought my heart was going to stop as I watched my sons heart beat flat line on the monitor next to me. Nurses and doctors were calling in specialist, trying to decide to take me c-section yet didnt have time so they had me push for several mins and then his birth happened so fast. I waited for this day to hold my baby yet that didnt happen! When Merrick was born the cord was wrapped around his neck and he was not breathing. I couldn't see what the doctors were doing rather hearing everyone working to do everything in the power to get my little man to breathe. Merrick was born at 6lbs which was not close to what was expected, Merrick did take a tiny breath in our room and then was rushed away to be cared for. A few hours later he had returned for just a moment when my husband and I noticed he was shaking, the doctors then rushed him into the NICU where doctors went back and fourth on whether it was a seizure and was not sure if he was strong enough to fight for his life. Merrick had a blood pool on his brain do to them trying to get him out of the birth canal quickly. A corrective helmet was required as his skull had calsified where the blood was sitting. Merrick's brain eventually started to grow up into the hole as the blood drained causing more issues than ever expected. Leaving us to fight with insurance again! We knew when he was released from the hospital this was just he beginning, We were toldMerrick might not live past the age of 1, then 2 and a G tube was placed in his stomach to help get him extra calories and to help gain weight, that did not work and at 3 years old was told his kidneys and liver had no room to grow and were pushing his intestines up into his stomach. Merrick never gained an ounce while being on a feeding tube as it made him throw up during feedings, and excessive bawl movements. So Kris and I decided to remove his feeding tube and left it in Gods hands. It wasn't until 4 years ago that Merrick was in the hospital again fighting for his life due to getting RSV which he had multipul times due to a low immuine system. While in the hospital I requested what is called a FISH test. In doing my research online I found your child would have to be hospitalized in order for insurance to pay for the cost as it is around $25K out of pocket.This test is taken by blood work and sent to a lab where each chromosone is broken down one by one until they find the breaks. Merricks is 1p36.32 with 31 oligoncleotides are deleted. (I am sure nobody will understand that!) =)
Of course we had to fight with insurance to pay and show a cause why it was requested and needed. Merrick's test results came back with a rare syndrome in which is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. My family was in shock, yet relieved to know that the doctors would not be pulling several tubes of blood to narrow down all the possiblities of what "could be". The doctors were not aware of this syndrome so we immed. started to research on the internet, searched for other families to help with unanswered question and could help us educate the doctors to get him the best care. Merrick is a strong fighter and continues to prove doctor after doctor wrong when they say he "can't or "won't". In the past year several other children with the same syndrome have lost their fight, we know there will come a day for Merrick and we try to live each day to the fullest and give him the best life we can. In July we have an opportunity to fly out to Orlando Florida with Merrick to meet other children, specialist, doctors and families all suffering from this disease. This is an chance to get answers and be with those that understand each day what we go through. We also will have the chance to go to Disney World! Merrick has a HUGE love for Mickey mouse and roller coasters however due to excessive medical bills, medications, and just having a baby we are way short on funds for flights, hotel, food, a rental car etc.. We are also trying to do fundraisers to help make this happen. We just dont know how much longer Merrick will be with us and want to provide him the best oppurnities we can as parents. Each day is a blessing we have with him. Merrick is so kind hearted, loves everyone he comes in contact, and thinks everyone is his Amma (grandma), he has a passion for trains, buses, school, monsters inc and signing time. I want nothing more than to see my child experience what other children have each day! If you can help in anyway we would be greatly appreciative. We understand not everyone can help with donations so if you could share that is all we ask! Thank you from the bottom of our hearts and God Bless!
The Kinser's
Merrick, Nyla-Rae, Carina and Kris
To learn more about Merricks syndrome please visithttp://www.1p36dsa.org
Organizer
Carina Tingey Kinser
Organizer
Roy, UT
