The day that changed our lives...

Dear Family and Friends-

This past Friday, September 11th, Annie and I were sitting in Phoenix Children’s Hospital talking with doctors on some upcoming tests for our baby, Scarlett Rose. Baby Scarlett was born healthy, but over the past month we started noticing that her leg, arm, and neck muscles were a bit weak and some milestones were being missed. We went in to see our Pediatrician, a GI Specialist, and last Monday a Neurologist. The Neurologist requested we admit Scarlett to Phoenix Children’s Hospital so they could run some tests to try and help identify what might be going on with our little girl.

Around 10:30 Friday morning, we headed down the hall to get an EMG test. We were told the results would not be ready until the afternoon, so I told my wife to go home and get some rest. We were told the test was going to be a bit painful, but they could find some answers by the time we were through. After the doctor finished prodding and shocking my baby she sat down with me and cut to the chase. She stated she was hoping to find the test pointed towards Infant Botulism, but her initial prognosis pointed to SMA. I took the news and as she left the room I lost it.

Spinal Muscular Atrophy (SMA) is the leading genetic killer of babies and toddlers under the age of two.

• SMA is a genetic disease characterized by a degeneration of motor neurons in the spinal cord.
• SMA rapidly destroys a child's muscle control and strength, leading to the progressive inability to walk, stand, sit up, eat, and ultimately, breathe.
• There are three types of SMA (I, II and III).
• SMA Type I - The most severe and usually diagnosed before 12 weeks of age. In 80% of affected Type 1 children; death occurs before age one.
• An estimated 1 in 6,000 to 1 in 10,000 infants are born with SMA.
• 1 in 35 people are carriers for SMA.
• There is no cure for SMA!

After I left the procedure room I was taken back to our room where I requested to leave the hospital so I could go home and tell my wife. I needed to be with her and telling her in this hospital was not the place. On the way out I was handed some information and was told to come back on Monday so they can pull some blood and send it to California for genetic testing. The test will take about three weeks for the results, but it will help identify the stage of SMA (1, II, or III), but Type II & III show up in the later years, so Type I is what they assume.

I am reaching out at this time for prayers because our family will be going through some tough times ahead. I can tell you this is the hardest thing that I have ever gone through and even with a strong faith I keep asking the Lord a lot of “Why?” questions. We don’t have a lot of answers on what is next, but we are working on a game plan for the next few days, weeks, and months ahead. We need all your prayers and will keep everyone updated if we find out anything new.

God Bless!
Ryan, Annie, and baby Scarlett Rose.