CURE SMA - SMA AWARENESS- LOVE Lolo
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Logan Rae Wehrheim (❤️❤️ LoLo) was born on June 16, 2017. She was two weeks past her due date but perfect in every way. She breezed through her early health checks developing beautifully.
On August 17, our lives changed forever at Logan’s pediatric 2 month check-up when Logan suddenly stopped breathing. She was rushed to the emergency room and admitted into PICU at St. Louis Children's Hospital with pneumonia and a collapsed left lung. She had to go through numerous amounts of assessments, testing, and stays on Bi-pap for her collapsed lung. She was then hospitalized for the next 26 days.
The first thing doctors noticed about Logan was floppiness from decreased muscle tone, her weak cough and soft cry. The pediatric neurologist ordered a genetic test, which diagnosed and confirmed Logan had Spinal Muscular Atrophy SMA (Type-1).
SMA is a muscular disease that affects the motor nerve cells in the spinal cord and gradually takes away childrens' physical strength. It often results in losing the ability to walk, eat, and breathe and is the number one genetic cause of death for infants, according to Cure SMA. Type-1 in SMA terms is the most severe meaning it is considered terminal with an average life expectancy of two years.
The most hopeful treatment today is a new drug called Spinraza. The research is promising, but it’s not without some drawbacks. It is not a cure, but it does help give LoLo a great chance at a prolonged life (with the help of medical equipment). Some sources state Spinraza is among the most expensive drugs in the world with a cost of about $750,000 to cover the six doses required in the first year and about $375,000 annually after that to cover three doses each year. Patients receive the drug through lumbar punctures (“spinal taps”) which require close supervision from a neurological team and precise timing for each dose.
Thankfully, Logan is receiving Spinraza. Her first treatment was August 26, 2017. From there, she received her 2nd treatment September 8th. Her 3rd treatment is scheduled September 25 and more treatments after that for the rest of her life.
“SPINRAZA offers new hope for the SMA community and exemplifies our mission of applying cutting-edge science to make a meaningful difference in the lives of patients with devastating, life-altering diseases,” said George A. Scangos, Ph.D., chief executive officer at Biogen.
We came back home September 11, 2017, with much needed equipment to support Logan. Home modifications and customizing everyday items is new to us, so it's taking time to adjust. She has a N-J tube that is given to her for feedings because she is unable to take them by mouth and she cannot receive feedings directly into the stomach. She can no longer swallow due to high risk of aspiration and filling her lungs with liquid. We will have surgery for a G-tube September 26 to maintain proper nutrition and fluids. They sent home a cough assist device, which is a machine that helps to clear her secretions from her lungs, as well as an aspiration suction machine used to extract mucus and other fluids from her.
We are happy to report that Logan is now home with us. She is 3 months old today and though young, she is fierce. We can see the fight in her eyes. She's sassy, very smart, and so incredibly brave. She brightens our world everyday. We are very thankful that Logan continues to have sensation and her ability to feel is not noticeably affected. Her intellect is normal and it is often observed that people with SMA are bright and sociable. Our primary goal is to make sure she is healthy, happy, and comfortable all the time. A simple cold in our home can land us in the Intensive Care Unit at St. Louis Children’s Hospital again.
As you can imagine, this along with hospital bills and at home care is a lot for one family to handle. She has a long road ahead and if anyone can assist monetarily, we have created her this Gofundme account for medical equipment and expenses too assist during this difficult time.
Please know we can use as many prayers, good thoughts, and vibes throughout this journey. It has become our mission to spread the word about SMA and Logan's daily challenges.
Please share and spread the word about Logan ❤️❤️ (LoLo) and SMA.
Love to you all!
On August 17, our lives changed forever at Logan’s pediatric 2 month check-up when Logan suddenly stopped breathing. She was rushed to the emergency room and admitted into PICU at St. Louis Children's Hospital with pneumonia and a collapsed left lung. She had to go through numerous amounts of assessments, testing, and stays on Bi-pap for her collapsed lung. She was then hospitalized for the next 26 days.
The first thing doctors noticed about Logan was floppiness from decreased muscle tone, her weak cough and soft cry. The pediatric neurologist ordered a genetic test, which diagnosed and confirmed Logan had Spinal Muscular Atrophy SMA (Type-1).
SMA is a muscular disease that affects the motor nerve cells in the spinal cord and gradually takes away childrens' physical strength. It often results in losing the ability to walk, eat, and breathe and is the number one genetic cause of death for infants, according to Cure SMA. Type-1 in SMA terms is the most severe meaning it is considered terminal with an average life expectancy of two years.
The most hopeful treatment today is a new drug called Spinraza. The research is promising, but it’s not without some drawbacks. It is not a cure, but it does help give LoLo a great chance at a prolonged life (with the help of medical equipment). Some sources state Spinraza is among the most expensive drugs in the world with a cost of about $750,000 to cover the six doses required in the first year and about $375,000 annually after that to cover three doses each year. Patients receive the drug through lumbar punctures (“spinal taps”) which require close supervision from a neurological team and precise timing for each dose.
Thankfully, Logan is receiving Spinraza. Her first treatment was August 26, 2017. From there, she received her 2nd treatment September 8th. Her 3rd treatment is scheduled September 25 and more treatments after that for the rest of her life.
“SPINRAZA offers new hope for the SMA community and exemplifies our mission of applying cutting-edge science to make a meaningful difference in the lives of patients with devastating, life-altering diseases,” said George A. Scangos, Ph.D., chief executive officer at Biogen.
We came back home September 11, 2017, with much needed equipment to support Logan. Home modifications and customizing everyday items is new to us, so it's taking time to adjust. She has a N-J tube that is given to her for feedings because she is unable to take them by mouth and she cannot receive feedings directly into the stomach. She can no longer swallow due to high risk of aspiration and filling her lungs with liquid. We will have surgery for a G-tube September 26 to maintain proper nutrition and fluids. They sent home a cough assist device, which is a machine that helps to clear her secretions from her lungs, as well as an aspiration suction machine used to extract mucus and other fluids from her.
We are happy to report that Logan is now home with us. She is 3 months old today and though young, she is fierce. We can see the fight in her eyes. She's sassy, very smart, and so incredibly brave. She brightens our world everyday. We are very thankful that Logan continues to have sensation and her ability to feel is not noticeably affected. Her intellect is normal and it is often observed that people with SMA are bright and sociable. Our primary goal is to make sure she is healthy, happy, and comfortable all the time. A simple cold in our home can land us in the Intensive Care Unit at St. Louis Children’s Hospital again.
As you can imagine, this along with hospital bills and at home care is a lot for one family to handle. She has a long road ahead and if anyone can assist monetarily, we have created her this Gofundme account for medical equipment and expenses too assist during this difficult time.
Please know we can use as many prayers, good thoughts, and vibes throughout this journey. It has become our mission to spread the word about SMA and Logan's daily challenges.
Please share and spread the word about Logan ❤️❤️ (LoLo) and SMA.
Love to you all!
Organizer
Ashley Wehrheim
Organizer
Saint Charles, MO
