A little while back we had the joy of a special visitor in our studio, Miss Avery! She absolutely loved being inside the studio and was fascinated with the process of having her picture made! She gave us smiles and was very vocal during our time together. She was celebrating a very important milestone (Turning ONE!) and had a Minions themed party. Avery is a beautiful child who happens to have Spinal Muscular Atrophy (SMA).
Per Cure SMA, "SMA is a 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. If you have never heard of SMA, it may be because it only affects 1 in 11,000 babies, however 1 in 50 people are genetic carriers, most of the time not knowing until they give birth to a child with SMA. There are four types of SMA. Avery was diagnosed with Stage 1 which is the most common, however the most severe type of SMA.
To raise awareness about SMA, and to offer hope for families who have recently went through having a child diagnosed with SMA, I thought it would be beneficial to hear from Avery's Mom and Dad about their journey through their words:
What were your thoughts when you first heard about Avery’s diagnosis of SMA?
Our first thought was,"what is SMA?" Like most, we had never heard of this kind of genetic disorder. Of course we were taken back by the news but we were so ready for answers at this point. We knew that something was wrong with Avery shortly after her birth and by 3 months of age, we were consulting with doctors, seeing specialist and getting testing results eliminating every other probability. At 6 months we took her to Brenners children's hospital for our final testing results. We waited almost 2 months for the genetic testing results to come back not only to confirm it was in fact SMA but to also classify her type which turned out to be the worst, type 1. During that time, we thought of nothing but the fear of losing our daughter. With this being a fatal disease that affects all muscles in the body, we knew either way, we were loosing our Avery. Being told that there is no cure for SMA, made it even worse. We thought of hope when we learned of a new treatment called Spinraza that was just FDA approved 9 months earlier. So by the time our test results were in, we thought of nothing but fighting for our daughter and doing whatever it took to start her treatment.
Have your thoughts changed now that you have processed the news and started a new “normal?”
Yes, our hope has turned into a new way of life which is what taken care of Avery is, a whole new way of living. Her spinraza treatments have not only slowed down the progression of her disorder but has reversed the effects of SMA. She has shown lots of improvements and continues to amaze us daily leaving us with thoughts of longer life for Avery even though, the life expectancy of an SMA type 1 is said to be only 18mons to 2 years of age
What’s your favorite thing about Avery?
So far this is the hardest question. My favorite thing about Avery is how proud she is of each of her accomplishments. Everyday she will try something new, for example, yesterday it was touching Her fingertips together, worked so hard till she mastered it. Her Dad's is her personality which is like no other. She is always extremely happy despite her limitations and she is very smart with a sweet soul. And the fact that she looks just like him!
What have you learned from Avery?
I have always been a thankful parent, blessed to have such amazing children, but Avery has taught me how to have a humble heart. I embrace everyday with a different outlook on life and we no longer sweat the small stuff.
What has been your greatest challenge dealing with SMA?
The greatest challenge for us so far is that no one understands. Family, friends or even doctor's don't know the hardships and struggles that come with caring for a child with SMA. There is no longer play dates or attending birthday parties. Every situation is accessed to determine if there is enough space for her and her equipment thats needed, if she is gonna be exposed to germs, even the weather is a threat for Avery, certain situations can mean hospitalization for us or can be life threatening. We very rarely get visitors, so unless you see it first hand, you do not know how hard it can be and will never be able to understand how we can't accept a couple's invite. Anything planned, including a date night with each other, means a nurse is scheduled and our time is limited. We can't just pile up in the car and go on a family outing. Not enough room in car for kids and all of Avery, lol, so most time with kids is spent with one parent at home tending to Avery and the rest of our time as family is spent together at home supporting each other.
What would you tell a parent who is just receiving the diagnosis of SMA for their child?
That there is no way to prepare for what's ahead. Together, we have 8 other children and Avery being our ninth and having SMA, it is like starting all over again with your first child. We had to learn everything we knew about caring for a baby but in a whole different way. A g-tube tube and feeding pump replaced bottles. Physical therapy replaced tummy time and our "What to Expect while Expecting" now consists of trach care and ordering monthly medical supplies. Having an SMA baby is a new way of life which even includes a new language. It want take long until you will start speaking in medical terms that only you, your partner, home heath nurses and team of doctors will understand.
How can people support Avery and your family?
People can show their support by joining, "Avery's Avengers" on Facebook and help spread SMA awareness. We can help save lives by just talking about it. Like us, so many have never heard of SMA until Avery was diagnosed with it. Which is strange considering it is the number one killer among infants and that 1 out of 50 people are carries of this gene.The key to treatment is early prevention and recently our state just approved a pregnancy screening to test this disorder which was a victory for the SMA community. We also ask for prayers and positive vibes sent our way in hopes that Avery will continue on her path of improving, one movement at a time.
What would you like to tell Avery about life?
Her Daddy would tell her that she has it made! And honestly, I agree. She will forever have someone taking care of her and showering her with love. There is nothing in this world she will face alone. She has brothers and sisters and extended family and friends that she will ensure that she only experience the good stuff in life!
What are your hopes for Avery?
Our hopes for Avery is to one day be able to do the simple things in life that we all take for granted. Running and playing, tasting desserts, or even breathing on her own. We also hope that as she gets older that she is protected from the cruelty that comes with being a special needs child. (knowing her brothers and sisters, shouldn’t be an issue) A personal hope of mine is to one day hear my beautiful and strong baby say Mama. Dad's personal hope is to continue taking it one day at a time and savoring the little things.
We would like to thank Keisha and Barrett for allowing us the opportunity to photograph Miss Avery and feature her on our blog. For more information about SMA and ways you can help, please visit Cure SMA. To stay up-to-date with Avery's journey, make sure to visit Avery's Avengers.