Connor Smith was diagnosed with a terminal illness called Spinal Muscular Atrophy Type 1. There is no treatment or cure. SMA is the #1 genetic killer of infants under the age of two but is widely unknown. Connor is 16 mo. old and is on hospice at home with his family.
Connor was born on September 17th, 2012. He was 5lbs 11oz, 19 inches long at 37 weeks. He was perfect.
What we didn't know at the time, was our lives would be changed forever and our worst fears confirmed when Connor was diagnosed with a terminal disease called Spinal Muscular Atrophy Type 1 (SMA) on January 24th, 2013. SMA is the #1 genetic killer of infants, there is no treatment or cure for this disease. He was diagnosed at 3.5 months old.
Connor's disease has been a big struggle for us. After fighting doctors for 3 months Connor's lung collapsed and he was admitted to the hospital. Our lives changed forever January 14th, we never knew that would be the last day our son would breathe on his own. Connor was in Pediatric Intensive Care for 60 days before he was discharged home on Hospice care on March 14th, 2013.
There is currently no treatment or cure for SMA, and unfortunately Connor has the most severe form, Type 1. 80% of children diagnosed with this do not see their first birthday, 90% do not see their second, but we are trying to beat the odds one day at a time.
We are trying to raise awareness for this horrifying disease. 1 in 40 adults are unknowingly carriers, that means about 7.5 million Americans have this deletion to cause SMA. When 2 carriers have a baby they have a 1 in 4 chance of having a baby with SMA. My husband and I had never heard of SMA, let alone knew we were carriers.
We have been fighting hard to advocate for our son and are currently trying to fundraise for money to help find a cure.
A simple blood test that can be run to see if one is a carrier, it should be a required test, or even in the newborn screen, but its not. The #1 genetic killer of infants is often pushed to the back burner and it is up to families like us to do something about it.
Connor has loads of equipment and medications, he has a ventilator, pulse oximeter, suction machine, feeding tube and pump, nebulizer, oxygen and a cough machine. Taking Connor out of the home is extremely hard and practically impossible.
SMA is a degenerative neuromuscular disease. Connor can not move his body, or his head. He has no swallow and we need to suction constantly to make sure he doesn't choke. His bottom left lobe of his lung is permanently collapsed. He faces cardiac issues, and he can not breathe on his own. Connor has also lost facial movement, he can't even smile. Connor has episodes daily, anywhere from 1-30 in a day. His episodes consist of him stopping breathing, turning blue, and going unresponsive. We have to fight through them and hope for the best, we never know when our last moment with him will be.
Please help us spread awareness for not only Connor and our family, but all of the other families that have to suffer through this.
Facebook - www.facebook.com/prayersforconnor
Blog - www.caringbridge.org/visit/connorsma1
Help support Connor - www.gofundme.com/1v8dpr4
Help find a cure - www.fsma.org/LWC/dsp_donationPage.cfm?idEvent=7583&idUser=17600
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