Stem Cells for Truett
Donation protected
Goal: We are raising funds to take our son, Truett, age 3.5 years old, to Panama (the country) for stem cells in hopes of repairing his damaged nerves. Truett has been undiagnosed since September 19, 2013, with a neuromuscular disease that damaged his nerves and left him paralyzed from the neck down and on life support to breathe. His mind is fully functioning as he is a smart, kind and funny little boy who is determined to move again like his friends and big sister.
Truett has seen the top neurologists from all over the United States and none of them can diagnose him. As he is undiagnosed, he does not qualify for any stem cell clinical trials in the United States.
We have met a child who is 8 years old and had nerve damage. She has received stem cells in Panama for the last few years and it has helped her to live a more typical life. She runs, goes to school without a wheelchair, breathes on her own and feeds herself. As this child with nerve damage has had so much success, we will be replicating her trips and visiting the same doctors for the same stem cell therapies.
To make the trip happen, we not only need to pay for Truett's stem cell treatment, but also forTruett and 3 of his home health nurses to fly to Panama. (Truett requires 24/7 nursing care and cannot be left alone at anytime or his trach airway might become blocked and suffocate him.) We will also need to pay for each nurse to have a seperate room (nursing agency's rules). The therapies may last as long as 5 weeks. Additionally, we will need to purchase international health care insurance in the (likely) event that Truett will need medical care while in Panama as our US health insurance does not cover this and his US doctors have no authority to write prescriptions in a foreign country.
Background: Truett was born a healthy little boy in July of 2013. At two months of age, he caught the enterovirus (a common cold). On September 19, 2013 he experienced respiratory distress and was rushed to the hospital. He was life flighted to a second hospital where it was determined that the cold had caused a small amount of pnemonia in his right lung. A medical error at that hospital caused Truett's right lung to collapse and he was then life flighted to a third hospital for a procedure. During one of the procedures his airway was damaged and he was required to go on life support for a week to recover. During that time, another medical error occurred and he became septic from feces from his diaper getting into his pic line. He almost died in front of our eyes, but he is a little fighter and miraculously recovered. A week later, he stopped moving his legs from the waiste down. Over the next two months, the paralysis slowly moved over the rest of his body and stopped at his neck. When he was well enough to be life flighted, we moved him to Children's Hospital of Colorado.
After 10 months in hospitals, 8 of these in the ICU, Truett came home with a trach and life support to breathe for him, a gtube for all feedings, and paralysis from the neck down. Doctors have narrowed the cause of his illness to 3 possibilities: 1) genetic disease --although he has been tested for every genetic disease currently known and none fit his illness; 2) enterovirus has recently caused paralysis in children and is sometimes referred to as the New Polio; 3) acquired autoimmune or immune disease caused from the sepsis infection.
As it is difficult to get insurance to pay for therapies as Truett is undiagnosed. They usually have a chart they follow that says if you have X disease then you qualify for Y treatments. Since Truett does not have a diagnosis, often times he does not receive treatment via insurance. Secondly, as Truett is a child, doctors and hospitals are less willing to try treatments on Truett when they don't know what caused this problem. We have applied to the Federal Undiagnosed studies but have not been accepted. Finally, Truett does not qualify to participate in clinical trials as he is not diagnosed.
About Truett: Truett is one of the most amazing 3 year olds you will ever meet. He is funny and loves to laugh. His favorite hobby is watching funny animation movies, such as Despicable Me 2, Minions, Angry Birds, Home, and Big Hero 6. He also loves listening, dancing and singing to popular music, especially Adelle, his all time favorite, with Taylor Swift as a close second. His favorite place to go is to his typical preschool once a week for social time with his friends. His best friends are his big sister (Age 6), his best friend from school (age 3), and his best friend with special needs (age 12).
Truett can communicate in many ways. He has taught us that when he raises his eyebrows it means "Yes." When he hard blinks, it means "No." He also stares at what he wants then looks back at us. Against all odds, as he has gotten older and stronger, he can talk around his trach. He will say about 20 words (usually he is saying something funny that makes us laugh or telling us that he loves us). He also uses a communication device called a Toby eye gaze. Its a computer that uses his eyes as the mouse to click on the words he wants to say. Eventually he will learn to surf the internet and type with this for school.
Truett is the busiest athlete you will meet. Every week he has physicial therapy 2-3 times, occupational therapy, speech therapy 2 times, music therapy, medical massage 1-2 times, acupuncture, electrostimulation and stands in his stander. He also must frequently visit his doctors and have multiple breathing treatments throughout the day. All of this would be taxing on a regular adult, however Truett is determined to move again. On his own will and motivation, he continues trying to move after his 1 hour OT and PT sessions that leave him thoroughly exhausted. And he has a will to live that I have never seen. I believe his determination, and God's hand, have saved him multiple times when he should have passed away.
When Truett grows up he wants to be a musician or physical therapist. Truett has taught us that anything is possible.
This is not an easy life for him, or our family, and therefore, as long as he fights, we will continue to fight with him. We have prayed a lot about this and believe that his best chance to change his stars is to receive stem cells. This trip will not be without risk. We therefore ask for your support and prayers for a safe and successful treatment for Truett.
Thank you!
With love and hope,
Thurston, Priscilla, Big Sister and Truett
Truett has seen the top neurologists from all over the United States and none of them can diagnose him. As he is undiagnosed, he does not qualify for any stem cell clinical trials in the United States.
We have met a child who is 8 years old and had nerve damage. She has received stem cells in Panama for the last few years and it has helped her to live a more typical life. She runs, goes to school without a wheelchair, breathes on her own and feeds herself. As this child with nerve damage has had so much success, we will be replicating her trips and visiting the same doctors for the same stem cell therapies.
To make the trip happen, we not only need to pay for Truett's stem cell treatment, but also forTruett and 3 of his home health nurses to fly to Panama. (Truett requires 24/7 nursing care and cannot be left alone at anytime or his trach airway might become blocked and suffocate him.) We will also need to pay for each nurse to have a seperate room (nursing agency's rules). The therapies may last as long as 5 weeks. Additionally, we will need to purchase international health care insurance in the (likely) event that Truett will need medical care while in Panama as our US health insurance does not cover this and his US doctors have no authority to write prescriptions in a foreign country.
Background: Truett was born a healthy little boy in July of 2013. At two months of age, he caught the enterovirus (a common cold). On September 19, 2013 he experienced respiratory distress and was rushed to the hospital. He was life flighted to a second hospital where it was determined that the cold had caused a small amount of pnemonia in his right lung. A medical error at that hospital caused Truett's right lung to collapse and he was then life flighted to a third hospital for a procedure. During one of the procedures his airway was damaged and he was required to go on life support for a week to recover. During that time, another medical error occurred and he became septic from feces from his diaper getting into his pic line. He almost died in front of our eyes, but he is a little fighter and miraculously recovered. A week later, he stopped moving his legs from the waiste down. Over the next two months, the paralysis slowly moved over the rest of his body and stopped at his neck. When he was well enough to be life flighted, we moved him to Children's Hospital of Colorado.
After 10 months in hospitals, 8 of these in the ICU, Truett came home with a trach and life support to breathe for him, a gtube for all feedings, and paralysis from the neck down. Doctors have narrowed the cause of his illness to 3 possibilities: 1) genetic disease --although he has been tested for every genetic disease currently known and none fit his illness; 2) enterovirus has recently caused paralysis in children and is sometimes referred to as the New Polio; 3) acquired autoimmune or immune disease caused from the sepsis infection.
As it is difficult to get insurance to pay for therapies as Truett is undiagnosed. They usually have a chart they follow that says if you have X disease then you qualify for Y treatments. Since Truett does not have a diagnosis, often times he does not receive treatment via insurance. Secondly, as Truett is a child, doctors and hospitals are less willing to try treatments on Truett when they don't know what caused this problem. We have applied to the Federal Undiagnosed studies but have not been accepted. Finally, Truett does not qualify to participate in clinical trials as he is not diagnosed.
About Truett: Truett is one of the most amazing 3 year olds you will ever meet. He is funny and loves to laugh. His favorite hobby is watching funny animation movies, such as Despicable Me 2, Minions, Angry Birds, Home, and Big Hero 6. He also loves listening, dancing and singing to popular music, especially Adelle, his all time favorite, with Taylor Swift as a close second. His favorite place to go is to his typical preschool once a week for social time with his friends. His best friends are his big sister (Age 6), his best friend from school (age 3), and his best friend with special needs (age 12).
Truett can communicate in many ways. He has taught us that when he raises his eyebrows it means "Yes." When he hard blinks, it means "No." He also stares at what he wants then looks back at us. Against all odds, as he has gotten older and stronger, he can talk around his trach. He will say about 20 words (usually he is saying something funny that makes us laugh or telling us that he loves us). He also uses a communication device called a Toby eye gaze. Its a computer that uses his eyes as the mouse to click on the words he wants to say. Eventually he will learn to surf the internet and type with this for school.
Truett is the busiest athlete you will meet. Every week he has physicial therapy 2-3 times, occupational therapy, speech therapy 2 times, music therapy, medical massage 1-2 times, acupuncture, electrostimulation and stands in his stander. He also must frequently visit his doctors and have multiple breathing treatments throughout the day. All of this would be taxing on a regular adult, however Truett is determined to move again. On his own will and motivation, he continues trying to move after his 1 hour OT and PT sessions that leave him thoroughly exhausted. And he has a will to live that I have never seen. I believe his determination, and God's hand, have saved him multiple times when he should have passed away.
When Truett grows up he wants to be a musician or physical therapist. Truett has taught us that anything is possible.
This is not an easy life for him, or our family, and therefore, as long as he fights, we will continue to fight with him. We have prayed a lot about this and believe that his best chance to change his stars is to receive stem cells. This trip will not be without risk. We therefore ask for your support and prayers for a safe and successful treatment for Truett.
Thank you!
With love and hope,
Thurston, Priscilla, Big Sister and Truett
Organizer
Priscilla Zahner Rosenlund
Organizer
Castle Rock, CO
