Dear friends.
We are the Parchim family. Rob, Amanda, McKinley and Mason.
Rob and I met in 1999 and married in 2004. We wanted to start a family right away. Unfortunately we dealt with unexplained infertility. Thankfully we had a great doctor and McKinley was born in 2007 and then Mason in 2010. We completed our family.
Mason was born on June 23rd at 35 weeks because I was sick. He was a strong 4lbs 15oz. He did not need the NICU, just the regular nursery for 9 days to learn the basics of being a tiny dude. He rocked it! He came home with an apnea monitor because he was a preemie but no complications. Mason had no diagnoses during pregnancy or at birth. He continued to grow and meet all his milestones.
October 1st, 2010 changed our lives forever! I got Mason up to change him for the day. As I was trying to dress him, something was off, he was stiff and not responsive. I immediately called 911. And that's when our journey began...
Mason was transferred to Illinois Children's Hospital in Peoria to be seen by specialists and have an EEG. At first is was thought that Mason had a reflux episode because his neuro exam and EEG were normal. We were sent home. From there the episodes continued and he was in and out of the hospital for seizures and tests. By early December 2010, through a micro array genetic test, he was diagnosed. He had a micro chromosome deletion on the right side of his #2 chromosome, 2q24.3-2q31.1. He is missing approximately 36 genes and one is the important gene known as SCN1a, known for severe intractable epilepsy. The gene regulates the sodium channels in your brain. This gene is also associated with Dravet Syndrome. Mason then spent his first Christmas in the hospital.
We are now in year 10 with our special boy. Along with the epilepsy, he has global development delays. He is non mobile, non verbal and has a g-tube for all his nutrition. His seizures are better controlled now than in the early years. He has had thousands of seizures and several types of seizures. He currently takes 3 anti seizure medications and a CBD oil. He sees 8 different specialist doctors and receives lots of therapy. Over the years he has had many outpatient tests and procedures, a few sets of ear tubes, adenoid removal, gtube placement surgery and 2 major hip surgeries and has taken 2 life flights. He has been hospitalized countless times for illnesses.
Mason is a fighter. He has overcome so much and always has a smile on his face. He loves his family, friends, school, books, music, telling jokes and just being talked to. He can brighten anyone's day!
We are now at a point where Mason is 57lbs and growing. Currently we use a special car seat. Mason does not have muscle tone to assist in any way. He is 100% reliant on us to carry him and support him. As he grows we need a safe way to transport him. His wheelchair is to big and heavy to fit in our car, so we use a fold up stroller that does not offer Mason any body support.
The cost of a handicap vehicle is not something we are financially able to do on our own. Therefore, we are turning to our family, friends and community to come together and help us lighten the cost of a van so Mason can travel safely to doctors appointments, continue to be in the community, watch his sister play sports, go to the park and visit relatives and friends. And to also save Mom and Dads' backs!
Your kind and generous donations will go directly to helping us purchase a new van for Mason and help with the necessary conversions needed to make it safe for him to be transported. Our need is urgent as our current vehicle is not reliable and is breaking down.
It saddens us that we can not have an event during this time of uncertainty to offer our thanks and appreciation while having fun and celebrating #ourheroMason. Thank you!
We are the Parchim family. Rob, Amanda, McKinley and Mason.
Rob and I met in 1999 and married in 2004. We wanted to start a family right away. Unfortunately we dealt with unexplained infertility. Thankfully we had a great doctor and McKinley was born in 2007 and then Mason in 2010. We completed our family.
Mason was born on June 23rd at 35 weeks because I was sick. He was a strong 4lbs 15oz. He did not need the NICU, just the regular nursery for 9 days to learn the basics of being a tiny dude. He rocked it! He came home with an apnea monitor because he was a preemie but no complications. Mason had no diagnoses during pregnancy or at birth. He continued to grow and meet all his milestones.
October 1st, 2010 changed our lives forever! I got Mason up to change him for the day. As I was trying to dress him, something was off, he was stiff and not responsive. I immediately called 911. And that's when our journey began...
Mason was transferred to Illinois Children's Hospital in Peoria to be seen by specialists and have an EEG. At first is was thought that Mason had a reflux episode because his neuro exam and EEG were normal. We were sent home. From there the episodes continued and he was in and out of the hospital for seizures and tests. By early December 2010, through a micro array genetic test, he was diagnosed. He had a micro chromosome deletion on the right side of his #2 chromosome, 2q24.3-2q31.1. He is missing approximately 36 genes and one is the important gene known as SCN1a, known for severe intractable epilepsy. The gene regulates the sodium channels in your brain. This gene is also associated with Dravet Syndrome. Mason then spent his first Christmas in the hospital.
We are now in year 10 with our special boy. Along with the epilepsy, he has global development delays. He is non mobile, non verbal and has a g-tube for all his nutrition. His seizures are better controlled now than in the early years. He has had thousands of seizures and several types of seizures. He currently takes 3 anti seizure medications and a CBD oil. He sees 8 different specialist doctors and receives lots of therapy. Over the years he has had many outpatient tests and procedures, a few sets of ear tubes, adenoid removal, gtube placement surgery and 2 major hip surgeries and has taken 2 life flights. He has been hospitalized countless times for illnesses.
Mason is a fighter. He has overcome so much and always has a smile on his face. He loves his family, friends, school, books, music, telling jokes and just being talked to. He can brighten anyone's day!
We are now at a point where Mason is 57lbs and growing. Currently we use a special car seat. Mason does not have muscle tone to assist in any way. He is 100% reliant on us to carry him and support him. As he grows we need a safe way to transport him. His wheelchair is to big and heavy to fit in our car, so we use a fold up stroller that does not offer Mason any body support.
The cost of a handicap vehicle is not something we are financially able to do on our own. Therefore, we are turning to our family, friends and community to come together and help us lighten the cost of a van so Mason can travel safely to doctors appointments, continue to be in the community, watch his sister play sports, go to the park and visit relatives and friends. And to also save Mom and Dads' backs!
Your kind and generous donations will go directly to helping us purchase a new van for Mason and help with the necessary conversions needed to make it safe for him to be transported. Our need is urgent as our current vehicle is not reliable and is breaking down.
It saddens us that we can not have an event during this time of uncertainty to offer our thanks and appreciation while having fun and celebrating #ourheroMason. Thank you!