Hugs for Scarlett against SMA

Scarlett giving a big smile as she plays with mommy!

Hello everyone,

Scarlett Rose McAlpine was born on September 3, 2015.  She was the healthiest and happiest baby you could imagine!  There are very few times you could ever find her without a smile ear to ear!

On February 18 we were rushed to the University of Iowa Hospital's emergency room via ambulance because Miss Scarlett was struggling to breathe and her oxygen was at a dangerous level.  She had contracted RSV (Respiratory Syncytial Virus Infection), which is a respiratory virus that is very serious for little ones.

While being treated for RSV in the hospital the doctors here had noticed that Scarlett didn't put any weight on her lower extremities and seemed very "floppy."  They were concerned there may be some underlying condition which was also making it harder for her to recover.  After various tests we received results that would change our lives forever, Scarlett Rose McAlpine was diagnosed with SMA (Spinal Muscular Atrophy) type 1 on February 25, 2016.

---------- Information About SMA ---------

SMA is a progressive genetic disorder that causes the motor nerve cells in the spinal cord to be weak, resulting in the inability to walk, eat, talk, sit up, breathe, and do many other physical abilities.  SMA is a recessive genetic disorder that is passed on by both parents.  There is a 25% chance in each pregnancy that the child will have this disorder if both parents are carriers (we are both carriers unfortunately).  SMA is the number one genetic cause of death in infants.

SMA is diagnosed with different levels and within each level there is a wide spectrum of severity.  Type 1 is the most common and the most severe type.  This type is diagnosed before the infant is 6 months of age.  Some reports say that 80% of SMA type 1 infants don't live past their first birthday!  However this is not set in stone as the disorder affects each baby differently.  As medical science advances the infants lifespan can be increased.  With the proper care and maintenance many families are seeing their children thrive and live for years!

---------- Why We Are Asking For Your Help ----------

We are asking for your donations to help Scarlett battle this disorder and give her the best life we possibly can!  Your donations will go directly to help pay for medical expenses, equipment, awareness, and education to help Scarlett and other SMA children.

Medical expenses are a huge concern with families that have an SMA child.  SMA causes a basic respiratory virus to be much more serious and even fatal, due to the weak breathing muscles.  This often requires emergency room visits and hospital/ICU stays.

There is a lot of special equipment that Scarlett will need due to her lack of motor skills.  These involve medical equipment at home to assist her breathing, strollers/car seats to help position her, feeding equipment when she is no longer able to swallow, and more.

As loving parents of a daughter with SMA, we want to do as much as we possibly can to help her thrive.  One way we can help Scarlett fight is physical therapy and speech therapy.  With these programs SMA children are able to do remarkable things that were once said to be out of their reach, like talking.  Some SMA children are actually hitting standard infant milestones!

We want to become as involved in SMA awareness as we possibly can, even when Scarlett is no longer with us.  We want to help anyone else that gets put in the situation that we are in!  Any extra money raised that we don't need for Scarlett will be used to help spread awareness and support for SMA families.

Your help means the world to us because you are helping us spend more precious time with our daughter!  Thank you so much for taking the time to read Scarlett's story and helping her fight this disorder!

Even as she sits in the University of Iowa Hospital's PICU hooked up to machines she will not stop fighting and smiling, and neither will we!

Scarlett rocking her winter outfit, less than a week before being admitted to the hospital!