Q & A with THE NOLAN FAMILY
Describe BENNETT's diagnosis and the physical limitations HE experienceS.
Bennett has SMA (spinal muscular atrophy). SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). This gene produces a protein that is critical to the function of the nerves that control our muscles. Individuals with SMA produce low levels of survival motor neuron (SMN) protein which eventually leads to nerve cell damage, in turn leading to muscle weakness.
SMA looks different for each individual diagnosed. Bennett can walk with support for short distances using a walker. However, at this time his most efficient means of getting from point A to point B is his wheelchair. SMA not only affects gross motor, but fine motor as well. Bennett experiences challenges with daily activities such as dressing himself, using utensils, writing, opening things, etc.
How old was Bennett when he got his first wheelchair and In what ways did it change his life?
Bennett was around 1 year old when he got his first wheelchair. He very quickly figured out that he was now in control of where he wanted to move. Being able to participate in “normal” activities such as chasing mom and dad around the house and interacting with peers at the library without help carrying him was so freeing and empowering for him. To this day he continues to be very efficient in his manual chair, but a power wheelchair is in his future soon to allow him more independence outdoors, for long distances and inclines, and for Kindergarten next year. He had the opportunity to trial some power chairs recently (or as he calls it, his “automatic” chair), and the look on his face when he realized he could speed up to keep up with his friends with just the push of a button was another unforgettable moment for all of us, especially for Bennett.
What type of transportation do you use for Bennett?
Bennett’s parents recently joined the minivan club and have plans for the vehicle to be converted to an accessible van soon. At that time Bennett will be able to be transported in his wheelchair using the van. Currently we use a typical car seat which is becoming increasingly difficult as he grows.
What types of hobbies or activities does Bennett enjoy?
Bennett enjoys participating in local adaptive sports including basketball and track and field. This winter he will be trying out a bowling league. He also enjoys music and dancing, and last spring he participated in a dance class. He has participated in adaptive horseback riding and loves to swim. Ben also enjoys just spending time outside at home doing things such as driving his motorized jeep, playing pickleball, T-ball and balloon volleyball. He loves camping and spending time around a fire, and we love to have our own campfires at home spending time telling stories and making s’mores. Ben really just loves to be with his family and friends. He is always up for adventure and a good time, even if it’s something he’s never done before.
Does Bennett take Evrysdi or any other SMA medication?
Bennett takes Evrysdi every day and received Zolgensma at 5 weeks old on October 5, 2020.
What led to Bennett’s diagnosis and how old was he?
Bennett was diagnosed with SMA through a blood test at birth called the Newborn Screen which screens for many genetic conditions at birth. We are fortunate that New York state included SMA in the newborn screen in 2020, because early diagnosis and treatment is very important.
We received a call from the pediatrician when Bennett was 7 days old explaining that he has SMA. At that time Bennett was not showing any symptoms, but over the coming weeks he gradually became weaker and weaker. He was barely moving his arms and legs at 5 weeks old when he was treated with a medication called Zolgensma (a one-time infusion replacing the gene he is missing). He has been making slow steady gains ever since and the sky is the limit.
What does a typical day for Bennett look like?
Bennett ALWAYS wakes up in a good mood, whether it’s a school day or the weekend. Ben attends full day preschool. so if it’s a school day, a typical day for Bennett is riding around the front yard in his motorized jeep while waiting for his bus with his little brother, Riley, in the passenger seat. At school, Bennett has lots of friends and is in a full class of 16 students. He receives speech therapy, physical therapy, and occupational therapy at school. After school, he enjoys a snack and some downtime with his family. When the weather is nice, we like to spend some time outside playing before bath and bedtime.
If it’s not a school day, a typical day for Bennett includes playing with his younger brother, Riley, or maybe a trip to the YMCA to swim or the children’s museum. He also participates in adaptive sports including bowling, track and field, and basketball.
DO you do any adaptive activities with Bennett?
We strive to find activities that incorporate our whole family and all of our abilities. For example, we love to play balloon volleyball. A balloon is lighter and slower paced than a real volleyball. We also utilize his gait trainer (a device that he stands in with a base on wheels) quite frequently at home which allows him to be fairly independent in a standing position. We have also found that our local community has several organizations that provide recreational activities for individuals with mobility devices and we will continue to seek out these opportunities for Ben as he grows.
Describe the difficulty of your current situation and how this will impact independence & SAFETY
Over the last couple of years, we realized that we seem to spend so much of our outdoor time in our front yard in the garage and driveway due to Ben’s ability to freely navigate these areas on his own. As he has grown and as we have added little brother to the mix, the driveway became a confined and somewhat dangerous play space. So, last year we decided to take on the daunting project of a backyard renovation that would provide a space for our entire family to enjoy together. We had a large patio installed to allow Ben to wheel around freely. We have a small folding ramp which is very steep and unsafe for Bennett to use on his own.
Our dream is to add a lift for Bennett to have true independence and freedom to utilize his own backyard. I dream of the day in the future when he is able to have friends over and tell us “Hey mom and dad, we’re going out back” and not have to ask for help accessing the patio. As Ben gets bigger, our small foldable ramp with become increasingly unsafe. In Western New York, we really cherish the warm weather months and spend as much time outside as possible. A lift would provide Ben the freedom to access his backyard all by himself, allowing him to grow in confidence and allowing us all to continue to create so many memories with our family and friends.
A lift would eliminate our current small foldable ramp we use to help Bennett down to the patio. Because of the height from the back door to the ground, the ramp we currently use is very steep and somewhat unsafe. When Ben moves into his new larger, heavier chair this will no longer be a safe option for him to use.
What do you want others to know about the differences you experience in your family's everyday life?
Our family’s everyday life is different, yet not all that different, than other families. I believe that every family has their own unique set of challenges. While we truly see Bennett for the person he is and not for his disability, the physical challenges that come with a diagnosis of SMA are and intricate part of our everyday life. Things such as using the restroom, dressing, eating, getting shoes on and off, packing up his backpack, getting in and out of the car are challenging for Ben and he needs help with these things.
We have to consider accessibility everywhere we go, especially as Bennett gets bigger. We consider accessibility for things such as concerts or shows, air travel, the movie theater, sporting events, etc. These are things that families without a wheelchair user do not encounter, but as we teach Bennett, we have our own unique set of challenges. Another difference our family experiences is how to embrace our differences and how to help shape Bennett’s outlook on life and his physical disability as he grows into a very bright and inquisitive little boy. As we tell Bennett, it’s all about figuring out how to do things “Bennett’s way.”
Explain the challenge and process of trying to get pUBLIC ASSISTANCE to pay for NECESSITIES.
Trying to obtain funding for home renovations through Medicaid is very daunting. We did attempt to obtain funding from the state to help make our backyard accessible for Bennett, however, that very quickly became a dead end. We were denied coverage because we (fortunately) already have a ramp entry through our garage.
Shouldn’t a young child access his home outdoor space as outdoor play is crucial for overall growth and development? And what if the entryway is blocked by a fire? These were my questions but no one seemed to be able to provide me an answer to these.