SMA Atlas

Navigating life with SMA after treatment

Scroll Down Icon

SMA Atlas

Navigating life with SMA after treatment

Fun for the whole family

A paper family holding hands

Discovering new and exciting activities that create lasting memories is a valuable bonding experience for your family. Families living with spinal muscular atrophy (SMA) sometimes have challenges finding inclusive activities for all of their children, especially their child with SMA. But the SMA community is full of incredible people always ready to lend a hand, and they’ve come together to share some suggestions about finding fun for the whole family.

Out and about

When the weather is warm, it’s a perfect opportunity to take advantage of activities outside of the home with these family-friendly ideas:

  1. Take an early evening stroll around your neighborhood
  2. Visit the beach (Don’t forget the umbrella or portable tent for sun protection and privacy)
  3. Have a picnic in the park
  4. Play mini golf
  5. Play tag
  6. Play modified baseball
  7. Create your own water park (Remember water safety!)
  8. Host an outdoor movie night
  9. Pitch a tent in your backyard and enjoy s’mores by a campfire
  10. Go to the zoo or find a drive-through wildlife park
  11. Take a walk on a powerchair-friendly trail
  12. Visit a museum

And remember: Activities can always be adapted for comfort depending on your child’s capabilities!

Beat the heat

Nothing beats a refreshing dip in the pool during a hot summer’s day. Not only is it fun for the whole family, but it may provide the benefit of aquatic therapy for your child with SMA. If you don’t have a pool, try a blow-up pool, or check out the community pools in your area. Be sure to visit your local facility ahead of time to determine your child’s equipment needs and to discuss the pool’s handicap accessibility with the manager.

Home sweet home

Cold weather and even minor sicknesses can present health concerns for children with SMA. During cold and flu season, families may need to stay isolated at home. Here is a list of the top safe and engaging activities you can do during the colder months:

  1. Plan a game night
  2. Do arts and crafts (painting, drawing, puzzles)
  3. Have a scavenger hunt
  4. Make a snowman in the yard
  5. Bake and decorate cookies
  6. Create personalized keepsakes for family and special people in your life
  7. Make silly videos together
  8. Have a dance party
  9. Build a tent in the living room and have a campout
  10. Play video games with family

“Always live life to the fullest and don’t avoid going anywhere or doing something because you have a child with special needs. There’s always a way to adjust and improvise to enjoy something special together.”

Tina, mother of Malachi who was diagnosed with SMA Type 1


Fun times ahead

The list of ideas above is just a starting point. To find more activities for your family, you can:

  • Let your children come up with ideas
    • Discuss with your children the importance of including a sibling with SMA in their activities. Having them come up with activity ideas helps them consider how to better include their sibling with SMA and can become a meaningful way for them to connect with one another. If your child with SMA is an only child, invite a few school friends over to brainstorm
  • Network with other families
    • Meet other families in the SMA community through message boards and social media. Ask about what ideas have worked for them, how they were able to adapt them for the entire family, and maybe even schedule a playdate together
  • Join a community planning board
    • This is a great way to have your thumb on the pulse of what your city has going on. Towns often host special events that can be the perfect way to try something new and unique
  • Adjust the rules
    • If you already have games and traditions in your family that you love, you can easily adapt the rules to make them more accessible for your child with SMA
  • Internet search
    • Let’s face it: The internet can be a great resource. A quick search will often give you a start on some new ideas that, with a little adjustment, would be perfect for the entire family

The family that plays together

You may have heard the saying, “The family that plays together, stays together.” When you play as an entire family, you strengthen your relationships and foster a deeper understanding of how to work and live together. It also shows your child with SMA that he or she is an important and valued member of the family whose limitations won’t prevent him or her from being a part of all the wonderful memories your family creates.

In times of a pandemic, follow the Centers for Disease Control and Prevention (CDC) and local health guidelines and also consult with your doctor before engaging in these activities.

Ryker, who was diagnosed with SMA Type 1, laughing in his dad's arms

Staying connected while staying home

Families living with SMA may need to isolate when flu season hits or when illness is high in the community. Hear from caregivers about the challenges of staying home and their advice on how to stay connected.

Slade, who was diagnosed with SMA Type 1, sitting with his family

Celebrating "inchstones" in SMA

Every parent looks forward to their child reaching major milestones. Hear from one family who celebrates inchstones along the way and what that means to them.

Get SMA Atlas updates

Don’t miss out! Sign up today to receive updates on new stories, videos, and tips!

Sign up now

Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.

Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.
  • Contact the patient’s doctor immediately if the patient’s skin and/or whites of the eyes appear yellowish, or if the patient misses a dose of the corticosteroid or vomits it up.

What should I watch for before and after infusion with ZOLGENSMA?

  • Viral respiratory infections before or after ZOLGENSMA infusion can lead to more serious complications. Contact the patient’s doctor immediately if you see signs of a possible viral respiratory infection such as coughing, wheezing, sneezing, runny nose, sore throat, or fever.
  • Decreased platelet counts could occur following infusion with ZOLGENSMA. Seek immediate medical attention if a patient experiences unexpected bleeding or bruising.

What do I need to know about vaccinations and ZOLGENSMA?

  • Talk with the patient’s doctor to decide if adjustments to the vaccination schedule are needed to accommodate treatment with a corticosteroid.
  • Protection against respiratory syncytial virus (RSV) is recommended.

Do I need to take precautions with the patient’s bodily waste?

Temporarily, small amounts of ZOLGENSMA may be found in the patient’s stool. Use good hand hygiene when coming into direct contact with bodily waste for 1 month after infusion with ZOLGENSMA. Disposable diapers should be sealed in disposable trash bags and thrown out with regular trash.

What are the possible or likely side effects of ZOLGENSMA?

The most common side effects that occurred in patients treated with ZOLGENSMA were elevated liver enzymes and vomiting.

Indication

What is ZOLGENSMA?
ZOLGENSMA is a prescription gene therapy used to treat children less than 2 years old with spinal muscular atrophy (SMA). ZOLGENSMA is given as a one-time infusion into a vein. ZOLGENSMA was not evaluated in patients with advanced SMA.

The safety information provided here is not comprehensive. Talk to the patient’s doctor about any side effects that bother the patient or that don’t go away.

You are encouraged to report suspected side effects by contacting the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch, or AveXis at 833-828-3947.

Please see the Full Prescribing Information.