Despite the fact that SMA is the #1 genetic killer of kids under two years old most people have never heard of it. Even doctors in major hospitals are extremely uneducated about the disease. This is a story that exemplifies why SMA awareness needs to be spread. Ella Hunt came into the world on August 2nd 2011 and was welcomed by her parents Erica and Dan as well as her two very active brothers, Noah and Carter. When she was just 4 months old she presented as “significantly delayed” and the tests began. The Hunts were given their beautiful daughters devastating diagnosis of SMA Type1, the most severe, on December 20, 2011. Erica writing about that day:
“Picture this moment, I (mom) sit in a dark hospital room at 4 am waiting for the clock to tick as this is the day we are running tests to determine what is wrong with our precious baby girl. I had heard the letters SMA mentioned by both the Developmental Pediatrician and the Neurologist. I had also been warned NOT to google anything by the doc’s. By 4 am I couldn’t stand it. I googled it and there it was……
SMA, a fatal illness with life expectancy of less than two years. A disease that limits kiddos from having (any) muscle movement, a swallow or respiratory function. I was heartbroken and with momma’s intuition I knew this was it.
Less than 6 hours later, my worst fears were confirmed. Only it was worse news than we thought. Upon diagnosis, we were told we had weeks to months left with her. ‘Go home and hold her.
‘She is going to die in your arms or in her sleep’ the doctors told us.
I vowed then to never put her down until that time came. We cried out in agony realizing this gift of life would be taken home way too soon.The hospital sent us home (a 3 hour drive) and had us immediately placed on Hospice. All her physical therapy services were cancelled and little to our knowledge at the time, Ella was also discharged as a patient (not just discharged from the hospital).
THERE WAS NO HOPE.
We were encouraged to sign a DNR (Do Not Resuscitate) form which neither Dan nor I could get ourselves to do. Looking back, it was a whisper from God telling us there is more to this story and it is not over yet.”
Thankfully Erica and Dan heard that whisper as their prayer for more time was about to be answered. A few states away a stranger, another SMA mom, was about to learn about Ella’s story. Sarah, proud mother of two boys and a daughter Stella (SMA Type1), received a message from a friend in California about a blog she had come across. Because Sarah actively spreads awareness her friend knew she would want to read about this little girl in Illinois. A woman was making purses from Ella’s dresses and wrote a blog about it. Sarah contacted the woman and asked if it would be ok for her to speak to Ella’s mother.
Sarah’s fateful phone call to the Hunts came one day before their scheduled meeting with the funeral home, which was the 8th of January. Ella’s celebration of life was scheduled for the 15th of January. They wanted family and friends to celebrate her life while she was still with them although they had accepted that the funeral would follow shortly after. Erica refers to this incredible SMA ambassador, Sara Turnbull, as their personal angel. She introduced them to her daughter Stella. Her (then) 5 year old SMA Type1 daughter. 5 Years old? She explained that there are options in care that can give a family more time. Time is what the Hunt family was after so they listened intently to the information the doctors had failed to mention. Sarah described a life that would not be easy, a life with lots of machines, but a happy life. A life with potentially years, instead of only months with their daughter. While there are no guarantees with anything, they wanted to try. Sarah suggested they contact Dr. Schroth (SMA specialist) in Madison WI. Sweet Stella proved to the Hunt family…
THERE IS HOPE
Erica writes about the days after that phone call:
“We called Madison directly the next day. Instead of planning a funeral we began planning her life. Instead of planning on her dying, we began to plan on her living. We made the trip to Wisconsin two weeks later and left shocked. Dr Schroth did not give us choices like IF you choose this, it was more like ‘so, you are here, and if you want more time, this is what we need to do.’ We left armed with resources and most importantly hope and a vision for her life.
On the second day of this SMA awareness month (August) Ella turned 2 years old. A huge milestone for all SMA families. Not only is she surviving but she is striving. She has some speech, a huge smile, and an active lifestyle with lots and lots of “Dancing in the Rain”. So why do we need to spread SMA awareness?
Because families wanting more time should know ALL of the options.