Life-Saving Treatment 4 Super-Strong Sawyer Burch
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“This is going to be a lifelong battle for Sawyer. Having an army of people willing and wanting to help is so comforting. He believes he is a superhero and I will continue to foster that, because at this point.. being alive.. he truly is”. - Katie Burch
"There is a superhero in all of us. We just need the courage to put on the cape” - Superman
The Burch Family - Taylor, Sawyer, Hawkins, Katie ❤️
For the last year and a half, Katie and Taylor Burch have been searching for answers and after extensive work ups and genetic testing they finally have one. Their four-year-old son Sawyer was diagnosed with Trifunctional Protein Deficiency (TFP). An extremely rare, life-threatening, autosomal recessive genetic disorder characterized by sudden crises of energy production and chronic energy deficiency.
To date, there are only 100 reported cases in the literature worldwide.
This rare condition prevents the body from converting certain fats to energy, particularly during periods without food (fasting) or illness. Patients with TFP may suffer from recurrent rhabdomyolysis (a breakdown of muscle tissue), liver dysfunction, neuropathy (weakness, numbness, and pain from nerve damage), retinopathy (which can lead to vision loss), and Cardiomyopathy (weakening heart muscle). This is because when the body cannot get energy from certain fats, it begins to breakdown these cells for energy instead. These symptoms can unfortunately lead to frequent hospitalizations and even premature death.
Katherine - "Sawyer make a silly face" - Sawyer "what about this"
Since those with TFP cannot break down certain fats, the best treatment is to replace them with a specially designed oil. Until recently, patients with disorders like TFP often continued to experience recurring hospitalizations, and high morbidity (suffering from a disease), and mortality rates despite consistent use of the standard oil therapy (C8).
Thankfully, Sawyer is young with all the spirit and might of a superhero, so we have an incredible chance, if we act quickly, to give him the best possible future and slow the progression and long term damage that can occur as a result of this disorder. We are asking everyone to please help us raise funds so Sawyer can start a newly approved live-saving oil supplement called triheptanoin (C7) as soon as possible. Patients treated with C7, showed significant improvement compared to those using the standard over the counter C8 oil regimen.
C7 comes in 500 ml vials with an average net price of $138,000 per patient per year. The actual amount needed depends on the patient’s caloric intake. For infants and small children the average net price will be closer to $46,000 per year. However, as Sawyer continues to grow, so too will his dose. As you can imagine, these figures are quite large and the insurance companies have thus far denied coverage of this incredible Live-Saving oil treatment.
Snakes are cool , and so are awesome big brothers like Sawyer.
Sawyer is already experiencing neuropathy (nerve damage), for which there is no treatment, and he has not yet had his vision screening to look for retinopathy, but thankfully, his heart looked very good! Especially for someone who has thus far lived without treatment.
If you ask him, Sawyer will happily show you his very cool, blue superhero boots! These help to stabilize his ankles. Sawyer will also tell you about his matching blue bracelet, and explain how it tells all the doctors what superhero medicines he might need in the case of an emergency.
Katherine- "Sawyer show us your superhero muscles"
Due to its extreme rarity, finding a medical provider with any experience in treating TFP is quite difficult. Fortunately, Katie and Taylor were able to arrange an appointment with Dr. Vockley, the worlds leading researcher on TFP located at The Children's Hospital of Pittsburgh. Metabolic and Genetic specialists at Vanderbilt University along with Sawyer's pediatrician Dr. Kelly Kries at Bowling Green Internal Medicine & Pediatric Associates will all be working closely with Dr. Vockley to help optimize Sawyers medical care.
“Being a family means you are a part of something very wonderful. It means you will love and be loved for the rest of your life.”
Sawyer will frequently need to travel from Kentucky to The Children's Hospital of Pittsburgh, for follow up appointments and monitoring throughout his entire life. Time off work and travel expenses for the Burch Family are another inevitable stressor that families of children with rare genetic diseases unfortunately often face. While our immediate focus is directed at raising funds for Sawyer to start this new Live-Saving C7 oil treatment, we know there will be numerous additional expenses in the future. It is our hope, that with your gracious contributions the Burch Family can focus solely on Sawyer's health rather than being weighed down by the financial Burden of this illness.
Mary Heslin and Katherine Citak Phelps are organizing this fundraiser on behalf of Sawyer, a Super Strong, incredibly sweet and special little boy, his wonderful parents, Katie and Taylor, and his adorable little brother, Hawkins. We are deeply appreciative for any contribution you may be able to make, no amount is too small. We sincerely thank you as well for your continued thoughts and prayers!
Please share their story with any friends, loved ones, co-workers, and employers who might be interested in helping a family optimize their son’s life. Sharing this fundraising link via your favorite social media channels is a great way to get the word out.
To learn more about the difficult challenges TFP patients and their families face please visit faodinfocus. For information regarding TFP and the recently approved triheptanoin oil C7 supplement please visit ajmc. If you have any further questions at all, please don't hesitate to contact us for additional information.
“I choose to rise up out of that storm and see that in moments of desperation, fear and helplessness, each of us can be a rainbow of hope, doing what we can to extend ourselves in kindness and grace to one another. And I know for sure that there is no them – there is only us.”
#Sawyerssuperoil
#Trifunctionalproteindeficiency
#TFP
"There is a superhero in all of us. We just need the courage to put on the cape” - Superman
The Burch Family - Taylor, Sawyer, Hawkins, Katie ❤️For the last year and a half, Katie and Taylor Burch have been searching for answers and after extensive work ups and genetic testing they finally have one. Their four-year-old son Sawyer was diagnosed with Trifunctional Protein Deficiency (TFP). An extremely rare, life-threatening, autosomal recessive genetic disorder characterized by sudden crises of energy production and chronic energy deficiency.
To date, there are only 100 reported cases in the literature worldwide.
This rare condition prevents the body from converting certain fats to energy, particularly during periods without food (fasting) or illness. Patients with TFP may suffer from recurrent rhabdomyolysis (a breakdown of muscle tissue), liver dysfunction, neuropathy (weakness, numbness, and pain from nerve damage), retinopathy (which can lead to vision loss), and Cardiomyopathy (weakening heart muscle). This is because when the body cannot get energy from certain fats, it begins to breakdown these cells for energy instead. These symptoms can unfortunately lead to frequent hospitalizations and even premature death.
Katherine - "Sawyer make a silly face" - Sawyer "what about this" Since those with TFP cannot break down certain fats, the best treatment is to replace them with a specially designed oil. Until recently, patients with disorders like TFP often continued to experience recurring hospitalizations, and high morbidity (suffering from a disease), and mortality rates despite consistent use of the standard oil therapy (C8).
Thankfully, Sawyer is young with all the spirit and might of a superhero, so we have an incredible chance, if we act quickly, to give him the best possible future and slow the progression and long term damage that can occur as a result of this disorder. We are asking everyone to please help us raise funds so Sawyer can start a newly approved live-saving oil supplement called triheptanoin (C7) as soon as possible. Patients treated with C7, showed significant improvement compared to those using the standard over the counter C8 oil regimen.
C7 comes in 500 ml vials with an average net price of $138,000 per patient per year. The actual amount needed depends on the patient’s caloric intake. For infants and small children the average net price will be closer to $46,000 per year. However, as Sawyer continues to grow, so too will his dose. As you can imagine, these figures are quite large and the insurance companies have thus far denied coverage of this incredible Live-Saving oil treatment.
Snakes are cool , and so are awesome big brothers like Sawyer. Sawyer is already experiencing neuropathy (nerve damage), for which there is no treatment, and he has not yet had his vision screening to look for retinopathy, but thankfully, his heart looked very good! Especially for someone who has thus far lived without treatment.
If you ask him, Sawyer will happily show you his very cool, blue superhero boots! These help to stabilize his ankles. Sawyer will also tell you about his matching blue bracelet, and explain how it tells all the doctors what superhero medicines he might need in the case of an emergency.
Katherine- "Sawyer show us your superhero muscles"Due to its extreme rarity, finding a medical provider with any experience in treating TFP is quite difficult. Fortunately, Katie and Taylor were able to arrange an appointment with Dr. Vockley, the worlds leading researcher on TFP located at The Children's Hospital of Pittsburgh. Metabolic and Genetic specialists at Vanderbilt University along with Sawyer's pediatrician Dr. Kelly Kries at Bowling Green Internal Medicine & Pediatric Associates will all be working closely with Dr. Vockley to help optimize Sawyers medical care.
“Being a family means you are a part of something very wonderful. It means you will love and be loved for the rest of your life.” Sawyer will frequently need to travel from Kentucky to The Children's Hospital of Pittsburgh, for follow up appointments and monitoring throughout his entire life. Time off work and travel expenses for the Burch Family are another inevitable stressor that families of children with rare genetic diseases unfortunately often face. While our immediate focus is directed at raising funds for Sawyer to start this new Live-Saving C7 oil treatment, we know there will be numerous additional expenses in the future. It is our hope, that with your gracious contributions the Burch Family can focus solely on Sawyer's health rather than being weighed down by the financial Burden of this illness.
Mary Heslin and Katherine Citak Phelps are organizing this fundraiser on behalf of Sawyer, a Super Strong, incredibly sweet and special little boy, his wonderful parents, Katie and Taylor, and his adorable little brother, Hawkins. We are deeply appreciative for any contribution you may be able to make, no amount is too small. We sincerely thank you as well for your continued thoughts and prayers!
Please share their story with any friends, loved ones, co-workers, and employers who might be interested in helping a family optimize their son’s life. Sharing this fundraising link via your favorite social media channels is a great way to get the word out.
To learn more about the difficult challenges TFP patients and their families face please visit faodinfocus. For information regarding TFP and the recently approved triheptanoin oil C7 supplement please visit ajmc. If you have any further questions at all, please don't hesitate to contact us for additional information.
“I choose to rise up out of that storm and see that in moments of desperation, fear and helplessness, each of us can be a rainbow of hope, doing what we can to extend ourselves in kindness and grace to one another. And I know for sure that there is no them – there is only us.”
#Sawyerssuperoil
#Trifunctionalproteindeficiency
#TFP
Fundraising team: Sawyer Strong (2)
Mary Heslin
Organizer
Bowling Green, KY
Katie Burch
Beneficiary
Katherine Citak Phelps
Team member
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