Q & A with the family
TELL US ABOUT REMI AND HER DIAGNOSIS. WHAT PHYSICAL LIMITATIONS DOES SHE EXPERIENCE?
Remi is a hilarious, wonderful 10-year-old girl who happens to have Spinal Muscular Atrophy (SMA) Type 1. She is unable to stand or walk independently, but she can sit unassisted for periods of time and uses her power wheelchair to get around. Her wheelchair gives her the freedom to move through the world independently and participate in everyday life alongside her family and friends.
WHEN DID YOU LEARN ABOUT REMI’S SMA DIAGNOSIS AND HAS SHE RECEIVED ANY TREATMENT FOR IT?
We learned about Remi’s diagnosis when she was around 3 months old, after she suddenly stopped moving her legs completely. We were incredibly fortunate that a treatment called Spinraza was in clinical trials and nearing FDA approval. Remi was able to participate in the Early Access Program and received her first treatment at just 4 months old. She has since transitioned to a daily oral medication. We have seen improvements in her strength, including being able to hold her legs in the air while lying down and move them while sitting. Her swallowing and speech have also improved significantly. Most importantly, she has remained stable and has not experienced the decline that SMA can cause.
HOW OLD WAS REMI WHEN SHE GOT HER FIRST WHEELCHAIR? HOW DID THE NEW CHAIR CHANGE HER LIFE?
Remi was under 2 years old when she received her first manual wheelchair. Around 2½, after some training, she received her first power wheelchair. Today, she uses her power wheelchair every day and is completely independent in operating it. We also have a manual wheelchair as a backup and for situations where her power chair can't be used, such as playing in the water.
Her power wheelchair has given Remi the ability to move through the world independently. It allows her to keep up with her friends, participate in activities, explore her surroundings, and make choices about where she wants to go. For Remi, her wheelchair isn't a limitation—it is what gives her freedom.
WHAT DOES A TYPICAL DAY LOOK LIKE FOR REMI?
A typical day for Remi looks pretty normal for a 10-year-old. We help her get dressed and out of bed in the morning, and during the week she attends a general education classroom with the support of a paraprofessional. When she gets home, she is usually FaceTiming friends, playing games, doing homework, or hanging out with her family. Her days are busy and full of all the same things that keep most 10-year-olds occupied.
WHAT TYPES OF HOBBIES DOES REMI HAVE? DOES SHE PARTICIPATE IN ANY WHEELCHAIR-ADAPTIVE ACTIVITIES?
Remi takes ballet and tap at our local dance studio, and she loves joining in on her little brother's soccer practices. She has a very adventurous spirit and is usually willing to give just about anything a try. Unfortunately, there aren't currently many wheelchair-adaptive activities close to us, but we are always hoping to find new opportunities for her to participate in.
DESCRIBE THE DIFFICULTY OF YOUR CURRENT SITUATION. HOW WILL THE NEW LIFT IMPACT YOUR FAMILY’S LIFE?
Our new home has a 32-inch drop from the main living area down into the living room. To build a ramp that meets accessibility code, we would need approximately 32 feet of ramp length. In a home of this size, that simply isn't a realistic use of the available space.
An indoor lift would allow Remi to access the living room safely and independently while allowing our home to remain functional and welcoming for the entire family. More than anything, it would give her the same freedom to move throughout her own home that her power wheelchair gives her everywhere else.
DESCRIBE THE SAFETY CONCERNS THAT THIS PROJECT WILL ADDRESS.
The lift would give Remi a safe and independent way to move between the different levels of our home. Right now, navigating the stairs requires assistance from two adults to safely help her up or down. Having a lift would remove that physical barrier and allow Remi to move between these spaces without having to wait for or rely on multiple people. It would also give our family peace of mind knowing that she can safely access every part of her home.
WHAT’S A MOMENT OF PURE, UNEXPECTED JOY WITH REMI that you have experienced?
Remi is such a light. She is incredibly easygoing and genuinely willing to try almost anything. This summer, she has started getting especially brave in the pool. She has been swimming to the bottom and doing flips underwater--with assistance, of course! Watching her get excited, take a chance, and discover something new is one of our favorite things about her. She doesn't let the way she moves through the world keep her from having fun in it.
IN WHAT WAYS HAS SMA MADE YOUR FAMILY EXPERTS AT SPOTTING THE BARRIERS MOST PEOPLE do not notice?
SMA has made us much more aware of the countless barriers wheelchair users encounter every day. There are so many entrances and spaces that technically meet accessibility codes but don't necessarily feel truly accessible when you're the person actually using a wheelchair. Bathrooms are another big example. Many public bathrooms don't have changing tables large enough for children over the age of two, which can create significant challenges for families whose children still need assistance with toileting or changing.
We've learned that accessibility isn't always just about whether a space technically meets a requirement. It's about whether a person can actually use that space with dignity, safety, and independence.
WHAT DO YOU WANT OTHERS TO KNOW ABOUT THE DIFFERENCES YOU EXPERIENCE IN YOUR FAMILY'S EVERYDAY LIFE?
So much of our everyday life requires a little more planning. We have to think about medical equipment, backup batteries, whether a wheelchair will fit somewhere, what happens if the chair stops working, and even what we'll do if it starts raining.
None of this defines our family or Remi's life, but it is something we have learned to think about automatically. We have also learned to be flexible and creative, because there is almost always a way to make something work.
QUESTION FOR REMI: IF THERE WAS An elevator THAT COULD TAKE YOU ANYWHERE, WHERE WOULD YOU go?
I would go to Los Angeles to meet Salish Matter!