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Lincoln is a 17 month old baby with Spinal Muscular Atrophy Type 1 (SMA). We are fighting for Lincoln's life, trying to get the FDA approved gene replacement therapy, Zolgensma. We have been denied multiple times by Lincoln's neurologist, Kaiser Permanent Insurance, the Department of Managed Health Care and Medi-Cal. We will do whatever it takes to get Lincoln this life saving treatment, even if that means paying out of pocket. While it is a hefty HEFTY price tag, we appreciate any donations to help get Lincoln this treatment. Should we get approved, the donations will cover medical expenses, attorney fees, travel expenses and any above and beyond that will be donated to CureSMA and other families fighting for Zolgensma.
SMA is a rare genetic neurological disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. It is the number one genetic cause of death for infants.
LINCOLN'S STORY....
Jason and I (Katee), have two beautiful children both from Katee's previous marriage. We have been trying to grow our family for many years now. Following a couple of miscarriages, we had our first child together in December of 2016, a beautiful healthy baby boy named Landry. Landry passed away 47 days later. We never learned why. The autopsy results say it was SIDS.
In May of 2018, we were again blessed with a healthy baby boy, Lincoln Vincent. At 5 weeks we took him into the ER for what we thought was a respiratory infection. We were told he was OK and sent home with an antibiotic. At 6 weeks we began noticing hypotonia (floppiness). At his 8 week check up we alerted his pediatrician. On August 1, 2018, at 11 weeks old Lincoln was diagnosed with SMA Type 1. We were told he wouldn't live to his first birthday...and certainly not his second.
However, at the time, was the only FDA approved treatment, Spinraza available. This treatment is administered every four months through an intrathecal injection (spinal injection) at the cost of $125,000 per injection. We were put on the fast track for Spinraza and began his loading doses at 12 weeks old.
Fast forward to May 2019 and the FDA approval of Zolgensma for infants under 2 years old. Lincoln is responding to Spinraza but his response is tepid. Lincoln is unable to lift his head or sit upright without support. Lincoln has what is so far an aggressive scoliosis condition that is impacting his chest cavity. His respiratory health is obviously our most concerning issue. Our neurologist tells us in the very near future he most likely will be put "under" with anesthesia to administer his Spinraza spinal injections (3x per year for the rest of his life)! Lincoln's scoliosis severely impacting his already weakened respiratory system makes us fear for his life should he require being put "under" for his next Spinraza spinal injection in January and into the future.
Zolgensma is a ONE TIME treatment through an IV. No "going under". No multiple times a year. One time to halt the progress of this disease.
We have since been told by doctors that it is highly likely that we lost Landry, our first son, to SMA and we have no intention of losing our second child, Lincoln, to SMA without putting up an epic fight.
Please help us get this life-altering treatment that Lincoln qualifies for and will HALT the progress of his disease.
SMA is a rare genetic neurological disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. It is the number one genetic cause of death for infants.
LINCOLN'S STORY....
Jason and I (Katee), have two beautiful children both from Katee's previous marriage. We have been trying to grow our family for many years now. Following a couple of miscarriages, we had our first child together in December of 2016, a beautiful healthy baby boy named Landry. Landry passed away 47 days later. We never learned why. The autopsy results say it was SIDS.
In May of 2018, we were again blessed with a healthy baby boy, Lincoln Vincent. At 5 weeks we took him into the ER for what we thought was a respiratory infection. We were told he was OK and sent home with an antibiotic. At 6 weeks we began noticing hypotonia (floppiness). At his 8 week check up we alerted his pediatrician. On August 1, 2018, at 11 weeks old Lincoln was diagnosed with SMA Type 1. We were told he wouldn't live to his first birthday...and certainly not his second.
However, at the time, was the only FDA approved treatment, Spinraza available. This treatment is administered every four months through an intrathecal injection (spinal injection) at the cost of $125,000 per injection. We were put on the fast track for Spinraza and began his loading doses at 12 weeks old.
Fast forward to May 2019 and the FDA approval of Zolgensma for infants under 2 years old. Lincoln is responding to Spinraza but his response is tepid. Lincoln is unable to lift his head or sit upright without support. Lincoln has what is so far an aggressive scoliosis condition that is impacting his chest cavity. His respiratory health is obviously our most concerning issue. Our neurologist tells us in the very near future he most likely will be put "under" with anesthesia to administer his Spinraza spinal injections (3x per year for the rest of his life)! Lincoln's scoliosis severely impacting his already weakened respiratory system makes us fear for his life should he require being put "under" for his next Spinraza spinal injection in January and into the future.
Zolgensma is a ONE TIME treatment through an IV. No "going under". No multiple times a year. One time to halt the progress of this disease.
We have since been told by doctors that it is highly likely that we lost Landry, our first son, to SMA and we have no intention of losing our second child, Lincoln, to SMA without putting up an epic fight.
Please help us get this life-altering treatment that Lincoln qualifies for and will HALT the progress of his disease.