Landen's Journey
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Please help us get Landen to New York! Here Doctors are treating patients with Dystonia daily!
Landen's Journey
Landen has always been a very active and competitive young man. Hitting a baseball pitch, and golf ball since he was 2, and skating since he was 3. Landen fell in love with team sports, and loves being a part of a team. He always has a smile on his face, and can often be heard sharing one of his many stories with anyone willing to lend him an ear. Landen played hockey, baseball, lacrosse, golfed, snowboarded, and water skied all before he was 6 years old.
In the fall of 2011 our son was crushed when for the 1st time in his life he was not able to skate. Having played hockey for 5 years this was devastating for Landen. He was fully dressed with all of his equipment on, skates laced up. But we quickly realized that he was in a lot of pain, and could barely stand in his skates. Landen never said a word as he walked down the hallway and, he tried so hard to get on the ice for evaluations. Unfortunately he was no longer able to stand on the thin blade with his left foot in a spasm in the skate. Landen was frustrated and angry! Heartbroken and starting to become depressed we were worried for our son. There must be something he could do as a team. I decided to reach out to the sledge hockey team in Calgary. Knowing my son wasn't completely disabled I wasn't sure if he would be able to play, but they assured me that he could! Yes!! We were so excited to tell our son that there were options and that he could still play the game he loved so much and be apart of a hockey team.
Landen playing sledge hockey
In the spring of 2012 Landen was diagnosed with Dystonia, and we have spent the last 4 years searching for answers on this rare and complex disease. Taking our son to hundreds of appointments at Children's Hospital. Landen has seen over 4 seperate teams of doctors, nurses, pysiotherapists, and numerous other specialists. We have watched as our son has suffered through the clinical trials of medications, and botox injections in his leg and foot.
Landen at Children's Hospital before his botox injections.
Landen suffers each and every day with chronic pain from the muscle spasms associated with his dystonia. Watching your child in pain is very difficult, and not being able to help fix that pain is even worse! Landen meets every challenge with a positive attitude, and hopeful that the next clinical trial will be the one that holds the key to helping him get relief from his painful spasms and let him be a normal kid again.
Landen sleeping, watch left foot it spasms for over a minute.
The treatments are painful, and the medications very hard on his body. Often leaving Landen feeling ill most of the time. Landen has missed a lot of school due to side effects caused by the medications, and appointments with doctors. Even though he may not be feeling well on any given day Landen will push himself to go to school, and works very hard to stay caught up. We are truly blessed with the amount of support we have received from his school and his teachers over the last 3 years.
Doctors in Canada have not seen many cases of Dystonia first hand, and none of them have ever seen a case like Landen's. We have been told many times that Landen is writing his own story, and although he's quite a story teller, this isn't a comforting feeling when all you really want is answers! We are excited to have been accepted by the Neurology team in Rochester, Minnesota. The doctors there are familiar with Dystonia, have seen many patients and various forms of Dystonia. With this disease experience is very helpful in making a successful diagnosis. We are hopeful that the doctors in Rochester will be able to provide us with the answers we so desperately need to give Landen relief and his childhood back. Landen's first visit is scheduled for May, 2015, and we need your help to get us there. Landen just wants his feet back to normal. Everything that he loves to do involves using his feet. There are days when Landen cries himself to sleep at night, asking why? Why did God make my feet like this? Why is happening to me? Why can't we fix it? We are desperate to answer his questions and to give him back his childhood. We are truly blessed to have such a wonderful son, and if you were to meet Landen I know you would be greeting a big smile and a bright spirit!
Thank You for taking the time to read about Landen's journey. We truly appreciate your love, support and prayers! Love the Adams!
The Adams
Landen playing Lacrosse
Landen as a Timbit. Landen has that beautiful smile on his face the same smile he has today. As a Timbit Landen was able to stand on his skates, and skate without issue.
Landen as a peewee, with coach Jerry (aka, Dad). When standing on his skates and striding Landen's ankles are almost on the ice and he struggles to stop. Still has that beautiful smile on his face, and never complains.
Landen's Journey
Landen has always been a very active and competitive young man. Hitting a baseball pitch, and golf ball since he was 2, and skating since he was 3. Landen fell in love with team sports, and loves being a part of a team. He always has a smile on his face, and can often be heard sharing one of his many stories with anyone willing to lend him an ear. Landen played hockey, baseball, lacrosse, golfed, snowboarded, and water skied all before he was 6 years old.
In the fall of 2011 our son was crushed when for the 1st time in his life he was not able to skate. Having played hockey for 5 years this was devastating for Landen. He was fully dressed with all of his equipment on, skates laced up. But we quickly realized that he was in a lot of pain, and could barely stand in his skates. Landen never said a word as he walked down the hallway and, he tried so hard to get on the ice for evaluations. Unfortunately he was no longer able to stand on the thin blade with his left foot in a spasm in the skate. Landen was frustrated and angry! Heartbroken and starting to become depressed we were worried for our son. There must be something he could do as a team. I decided to reach out to the sledge hockey team in Calgary. Knowing my son wasn't completely disabled I wasn't sure if he would be able to play, but they assured me that he could! Yes!! We were so excited to tell our son that there were options and that he could still play the game he loved so much and be apart of a hockey team.
Landen playing sledge hockey
In the spring of 2012 Landen was diagnosed with Dystonia, and we have spent the last 4 years searching for answers on this rare and complex disease. Taking our son to hundreds of appointments at Children's Hospital. Landen has seen over 4 seperate teams of doctors, nurses, pysiotherapists, and numerous other specialists. We have watched as our son has suffered through the clinical trials of medications, and botox injections in his leg and foot.
Landen at Children's Hospital before his botox injections.
Landen suffers each and every day with chronic pain from the muscle spasms associated with his dystonia. Watching your child in pain is very difficult, and not being able to help fix that pain is even worse! Landen meets every challenge with a positive attitude, and hopeful that the next clinical trial will be the one that holds the key to helping him get relief from his painful spasms and let him be a normal kid again.
Landen sleeping, watch left foot it spasms for over a minute.
The treatments are painful, and the medications very hard on his body. Often leaving Landen feeling ill most of the time. Landen has missed a lot of school due to side effects caused by the medications, and appointments with doctors. Even though he may not be feeling well on any given day Landen will push himself to go to school, and works very hard to stay caught up. We are truly blessed with the amount of support we have received from his school and his teachers over the last 3 years.
Doctors in Canada have not seen many cases of Dystonia first hand, and none of them have ever seen a case like Landen's. We have been told many times that Landen is writing his own story, and although he's quite a story teller, this isn't a comforting feeling when all you really want is answers! We are excited to have been accepted by the Neurology team in Rochester, Minnesota. The doctors there are familiar with Dystonia, have seen many patients and various forms of Dystonia. With this disease experience is very helpful in making a successful diagnosis. We are hopeful that the doctors in Rochester will be able to provide us with the answers we so desperately need to give Landen relief and his childhood back. Landen's first visit is scheduled for May, 2015, and we need your help to get us there. Landen just wants his feet back to normal. Everything that he loves to do involves using his feet. There are days when Landen cries himself to sleep at night, asking why? Why did God make my feet like this? Why is happening to me? Why can't we fix it? We are desperate to answer his questions and to give him back his childhood. We are truly blessed to have such a wonderful son, and if you were to meet Landen I know you would be greeting a big smile and a bright spirit!
Thank You for taking the time to read about Landen's journey. We truly appreciate your love, support and prayers! Love the Adams!
The Adams
Landen playing Lacrosse
Landen as a Timbit. Landen has that beautiful smile on his face the same smile he has today. As a Timbit Landen was able to stand on his skates, and skate without issue.
Landen as a peewee, with coach Jerry (aka, Dad). When standing on his skates and striding Landen's ankles are almost on the ice and he struggles to stop. Still has that beautiful smile on his face, and never complains.
Organizer
Jennifer Dustow
Organizer
Okotoks, AB
