After Spinraza: My new life with SMA

Kate, who has SMA, out walking on a trail.

When I was 4 years old, I was diagnosed with spinal muscular atrophy (SMA) at Boston Children’s Hospital. My mom will probably tell you that it was the worst day of her life — SMA is a relatively uncommon disease that comes with a lifetime diagnosis, so it caused a level of uncertainty as to what my future would hold.

SMA runs on a spectrum, and I happen to have a less severe case, called type III SMA. I can walk short distances, but otherwise use a wheelchair, and have fairly average strength throughout my body, with the exception of weakness in my legs.

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A valentine for Robbie

Family raising two boys - one with hemophilia and one without

Your smile is infectious — a picture of joy.

Clearly, you’re not a typical 3-year-old boy.

Whether cooking with Mommy, shooting hoops with Daddy,

climbing on Eddie or messing with Atty;

you find the fun in everything you do.

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Celebrating six: Stories of inspiring hearts

Sonia, who was born with congenital heart disease, dances onstage.

February is American Heart Month. Join us in celebrating our team members whose personal experiences led them to Boston Children’s Hospital Heart Center and honoring our patients whose care led them to pay it forward. From our hearts, to yours.


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What you should know about knee instability and dislocations in young athletes

lead image Milewski patellofemoral instability

Pain in the kneecap (patella) is very common in young athletes. It’s estimated that up to 15% of adolescents get some degree of patellofemoral pain. Most can be treated with rest, ice, non-steroidal anti-inflammatory drugs (NSAIDs) and sometimes rehab exercises. But instability of the patella — known as patellofemoral instability — is relatively less common, and more worrisome for children and adolescents.

The term “patellofemoral instability” can refer to either a traumatic injury in which a person dislocates their patella, or just general instability in the knee that a person may feel or a physician may observe upon examination. In both cases, it’s important the individual receives the proper treatment in order to avoid long-term damage.

Thriving talked to Dr. Matthew Milewski, a pediatric orthopedic sports medicine surgeon in Boston Children’s Orthopedics and Sports Medicine Center, about what kids and parents should be aware of if they experience this knee condition.

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