Please visit our new site at
www.dylanrockon.org
to register for the 4th Annual Dylan's Dinosaur Stomp!
Our Story:
The Dylan Flinchum "Rock On!" Foundation was established to help provide love and support to Mike and Melissa (Larsen) Flinchum and their beautiful three year old son, Dylan.
Shortly after Dylan’s second birthday, he began to experience difficulty walking. After being referred to several medical specialists (including some of the top neurosurgeons in the country at Cornell Medical Center in NYC) it was determined that Dylan had a condition known as Chiari malformation. Dylan underwent surgery in the spring and was expected to make a full recovery.
After several weeks of physical therapy, Dylan was not progressing as expected and began to show symptoms that were unrelated to the malformation. A follow up MRI was completed and doctors were shocked to significant change in Dylan's white brain matter. After getting the initial diagnosis from Cornell, Mike and Melissa traveled to the Children’s Hospital of Philadelphia (CHOP) where it was confirmed that Dylan is suffering from a degenerative disease known as metachromatic leukodystrophy, often referred to as MLD.
As they all prepare to cope with this horrible disease, everyone is focused on one thing, Dylan. Their goal is to make Dylan as happy and as comfortable as possible while bringing as many smiles to his face as they can.
In order to best achieve this, they will likely be missing extended periods of work as well as making many trips back and forth to various Pediatric Specialists to be sure that they are providing Dylan with the best care that is offered. Dylan will also require special medical equipment and various types of therapy to make him more comfortable as the disease continues to progress.
The Dylan Flinchum "Rock On!" Foundation has been created as we all want to help ease just some of the burden Mike and Melissa are facing so that they can devote all their time and effort on Dylan. Please also visit our Facebook Page to send your kind words and prayers to Mike and Melissa on the Foundation Page (if you have a Facebook account) as they need all of our love and support. We have had several successful fundraisers including a Garage Sale, Dance-a-thon and Tattoo Event! Coming in May will be the First Annual Dylan's Dinosaur Stomp!!! Please click on the tab above for more information and to register.
In the meantime if you would like to contribute to the Foundation or have any other questions, please send an email to: [email protected]
Please keep the Flinchum and Larsen families in your thoughts and prayers!
2013 Update
Overall, Dylan’s health is good. Over the past year and a half we have started many treatments to help it stay that way and also have may people involved in his life to help with this. In January of 2012 we started the transition from his team of doctors at CHOP & researched doctors closer to home. We wanted to have all of his team, including his pediatrician, out of the Goryeb Center in Morristown, NJ. We were extremely lucky to find a great team including a Neurologist, Pulmonologist & Respiratory Therapist, and GI doctor & Nutritionist. He still sees his Physiatrist out of Children’s Specialized Hospital in Mountainside, NJ. Our main reason behind doing this is
we wanted him to be close to home so if the time comes that he needs a hospital stay our family and friends will be close and can see him and help support us.
Dylan has two amazing nurses who are with us Monday-Friday for the full day. Dylan receives Physical Therapy 2 times a week, Occupational Therapy 1 time a week and also has a teacher come to the house 2 times a week through the school system. In addition, Dylan still attends KEEP, Inc., a few hours a few days a week. His nurse goes with him and we truly believe that this continued interaction has done so much for him and he loves to see his friends and his teachers. We do keep him busy but also know when to give him a rest.
Each day Dylan gets 6 medications, at various times and doses. Each day Dylan has a “Vest” treatment, his “shaky vest”, when he isn’t feeling well he gets this 2 or 3
times a day. Each day Dylan gets a Cough Assist treatment, again when he isn’t feeling well he gets it multiple times a day. We also do regular chest PT throughout the day and range of motion activities. Again, his days are pretty full but we are fortunate to have help. When he isn’t feeling well these treatments are a full time job. Many times children do not have access to the machines that do these treatments until after they get sick and have a hospital stay, we are fortunate that his Respiratory Therapist & Pulmonologist think like Mike and I do and would rather be proactive and do these things to help prevent any sickness. The support of the foundation has
also played an important role in this because we have the means to get what we need for him, even if insurance doesn’t cover it.
Dylan is still very wide eyed and attentive, he loves to be read to, he loves to watch his shows on Disney Jr., he loves to be outside and go places and he loves being around his family, especially his cousins who are all so helpful with him.
We do know that this all can change in an instant so we try never to take a day or moment for granted. You all help us do that with your support, not having to worry about how we are going to pay the next bill allows us to enjoy every special moment with Dylan and we are forever grateful for that. In addition, we have been able to pay it forward throughout the past year and have done things to help bring a smile to other children and their families. Thank you for allowing us to do that, it helps to feel that through this journey we are able to help others while we raise awareness.
Shortly after Dylan’s second birthday, he began to experience difficulty walking. After being referred to several medical specialists (including some of the top neurosurgeons in the country at Cornell Medical Center in NYC) it was determined that Dylan had a condition known as Chiari malformation. Dylan underwent surgery in the spring and was expected to make a full recovery.
After several weeks of physical therapy, Dylan was not progressing as expected and began to show symptoms that were unrelated to the malformation. A follow up MRI was completed and doctors were shocked to significant change in Dylan's white brain matter. After getting the initial diagnosis from Cornell, Mike and Melissa traveled to the Children’s Hospital of Philadelphia (CHOP) where it was confirmed that Dylan is suffering from a degenerative disease known as metachromatic leukodystrophy, often referred to as MLD.
As they all prepare to cope with this horrible disease, everyone is focused on one thing, Dylan. Their goal is to make Dylan as happy and as comfortable as possible while bringing as many smiles to his face as they can.
In order to best achieve this, they will likely be missing extended periods of work as well as making many trips back and forth to various Pediatric Specialists to be sure that they are providing Dylan with the best care that is offered. Dylan will also require special medical equipment and various types of therapy to make him more comfortable as the disease continues to progress.
The Dylan Flinchum "Rock On!" Foundation has been created as we all want to help ease just some of the burden Mike and Melissa are facing so that they can devote all their time and effort on Dylan. Please also visit our Facebook Page to send your kind words and prayers to Mike and Melissa on the Foundation Page (if you have a Facebook account) as they need all of our love and support. We have had several successful fundraisers including a Garage Sale, Dance-a-thon and Tattoo Event! Coming in May will be the First Annual Dylan's Dinosaur Stomp!!! Please click on the tab above for more information and to register.
In the meantime if you would like to contribute to the Foundation or have any other questions, please send an email to: [email protected]
Please keep the Flinchum and Larsen families in your thoughts and prayers!
2013 Update
Overall, Dylan’s health is good. Over the past year and a half we have started many treatments to help it stay that way and also have may people involved in his life to help with this. In January of 2012 we started the transition from his team of doctors at CHOP & researched doctors closer to home. We wanted to have all of his team, including his pediatrician, out of the Goryeb Center in Morristown, NJ. We were extremely lucky to find a great team including a Neurologist, Pulmonologist & Respiratory Therapist, and GI doctor & Nutritionist. He still sees his Physiatrist out of Children’s Specialized Hospital in Mountainside, NJ. Our main reason behind doing this is
we wanted him to be close to home so if the time comes that he needs a hospital stay our family and friends will be close and can see him and help support us.
Dylan has two amazing nurses who are with us Monday-Friday for the full day. Dylan receives Physical Therapy 2 times a week, Occupational Therapy 1 time a week and also has a teacher come to the house 2 times a week through the school system. In addition, Dylan still attends KEEP, Inc., a few hours a few days a week. His nurse goes with him and we truly believe that this continued interaction has done so much for him and he loves to see his friends and his teachers. We do keep him busy but also know when to give him a rest.
Each day Dylan gets 6 medications, at various times and doses. Each day Dylan has a “Vest” treatment, his “shaky vest”, when he isn’t feeling well he gets this 2 or 3
times a day. Each day Dylan gets a Cough Assist treatment, again when he isn’t feeling well he gets it multiple times a day. We also do regular chest PT throughout the day and range of motion activities. Again, his days are pretty full but we are fortunate to have help. When he isn’t feeling well these treatments are a full time job. Many times children do not have access to the machines that do these treatments until after they get sick and have a hospital stay, we are fortunate that his Respiratory Therapist & Pulmonologist think like Mike and I do and would rather be proactive and do these things to help prevent any sickness. The support of the foundation has
also played an important role in this because we have the means to get what we need for him, even if insurance doesn’t cover it.
Dylan is still very wide eyed and attentive, he loves to be read to, he loves to watch his shows on Disney Jr., he loves to be outside and go places and he loves being around his family, especially his cousins who are all so helpful with him.
We do know that this all can change in an instant so we try never to take a day or moment for granted. You all help us do that with your support, not having to worry about how we are going to pay the next bill allows us to enjoy every special moment with Dylan and we are forever grateful for that. In addition, we have been able to pay it forward throughout the past year and have done things to help bring a smile to other children and their families. Thank you for allowing us to do that, it helps to feel that through this journey we are able to help others while we raise awareness.