Adyn was born in February of 2004 at The Ohio State University Medical Center. She came home as many other babies do, and showed no abnormal developmental signs through her first year. After a year, her parents were noticing that she was making no advancement in movement. She could stay in an upright sitting position, but no crawling … no walking. Her parent’s brought her back to Columbus, but this time to the neuromuscular department at Nationwide Childrens Hospital for some bloodwork and evaluation. At the age of 18 months, she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. The general prognosis for children with SMA Type 1 is bleak … most of them falling victim to SMA by the age of 2 years old. This is the kind of news that no parent is ready to receive or handle.
After Adyn’s 2nd birthday, she was re-evaluated based on her relative strength and health at that stage, and her diagnosis was upgraded to SMA Type 2. Type 2 kids are a little stronger; but will still never be able to walk or crawl, she will still suffer from extreme physical weakness, and due to this weakness, will be very susceptible to injury & traumatic illness (meaning there is no such thing as a “common cold” for SMA kids – every illness brings the potential for something much worse).
Despite being unable to freely move independently, Adyn not only loved life – she embraced every single aspect of it! When she was 2 ½, she received her first purple power wheelchair, and the world changed for Adyn – she could move!!!￼
As time went on, her passions started showing at an early age. Being about the sweetest girl you’d have ever met – she was very concerned & sensitive to how everyone was feeling, and always wanted to help in any way she could. She was also the 2 year old that knew every word to every song on the The Beatles “White Album,” as well as a passionate fan of the The Wiggles. In fact, The Wiggles were the first band that Adyn got to meet, and her sweet little world was rocked!￼
At the age of 3, Adyn began pre-school at the nearby public school. Even though we’ve had a great relationship with her school – we were introduced to new challenges and concerns as Adyn transitioned to school. There were the logistical struggles that needed addressed to make sure she was cared for physically during bus transportation and while at school. Perhaps the most concerning was the introduction of the school germs on her weakened immune system. The first year was difficult in terms of keeping Adyn healthy. Many kids get sick when first going to school, but with SMA, even the common cold can end with a trip to the Childrens Hospital.
In fact, in June of 2010, the cold Adyn had ended up being anything but common. After being rushed to the local hospital in the middle of the night – Adyn was then transported via ambulance to Nationwide Childrens Hospital and admitted into the Intensive Care Unit due to a dangerously low oxygen saturation level. She was hooked up to a number of machines and monitored closely 3 days before being able to leave the PICU for the Respiratory Unit. She left a few days later … but these are the episodes that can lead to much worse results for many SMA kids … Adyn was a lucky one.
As time moved on, as music became intertwined in Adyn’s life, so did festivals and concerts. Along the way, she’s been able to meet many of her favorite artists, and have conversations with those people whose music moved her. By meeting the artist, she formed a greater relationship with the music and a deeper appreciation for their craft. She soon began insisting on the bands the family sees in concert, and listening to their music non-stop. Here are some of her recent favorites …
[rescue_column size=”one-fourth” position=”first”]
The Steel Wheels [/rescue_column]
[rescue_column size=”one-fourth” ]The Avett Brothers[/rescue_column]
[rescue_column size=”one-fourth” ]Sarah Jarosz[/rescue_column]
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Old Crow Medicine Show[/rescue_column]
[rescue_column size=”one-fourth” ]Shook Twins[/rescue_column] [rescue_column size=”one-fourth” ]
So in August of 2013, Adyn and her dad were on their way back to Athens, Ohio from Nashville after seeing Old Crow Medicine Show, and a great discussion began regarding how Adyn could combine her passions of music and making a real difference in helping other families with children born with Spinal Muscular Atrophy. Children born with SMA (if they are born strong enough to leave the hospital) will have a lot of special needs that require equipment, home & vehicle modifications, hospital bills (or other expenses involved in extended hospital stays), and many other expenses. Another aspect that Adyn wants to help SMA families with is to help sponsor families to travel to the national annual CureSMA conferences. The benefits that come from spending time with other SMA families, SMA researchers and even seeing the industries newest products is an experience that will change their lives for the better. These are experiences that have made such an impact for Adyn’s family – that she wants to provide that opportunity to other families that can’t afford to make the trip.
Adyn’s Story doesn’t end there … this is just the beginning. Thank you for visiting our site and doing your part in supporting Adyn’s Dream … please feel free to contact us with any questions, comments or offers to help! Adyn’s ready to make this dream a reality … it’s a dream that helps keep families from focusing on money for necessities and allows them to focus on what’s important – loving each other.