Lawyer fights for children’s rights while fighting genetic disease

When Alexa Dectis wasn’t able to walk, crawl or stand when she was a newborn her mother was aware that something was not right. At first, doctors advised her to relax -maybe Alexa was simply a “lazy infant.” As time passed however her mother’s instincts proved correct. After consulting a specialist, Alexa was identified as a child suffering from a rare illness known as spine muscular atrophy (SMA).

“SMA is an inherited disorder that impacts your central nervous system as well as the muscles throughout our bodies,” Alexa explained. The people who are diagnosed with SMA might experience various symptoms and severity levels However, all suffer a gradual decline in muscle strength as time passes. Some individuals may not be able to sit, certain people sit but cannot walk, and others have the ability to walk, but lose that capacity as they age.

In Alexa’s adolescence and childhood, There were no approved treatments for SMA, and children who were born suffering from the severe type of the disease usually passed away before reaching their two-year birthday. In the absence of treatment options, Alexa had no choice but to control the effects as best she could. However, her muscles continued to diminish in strength over time.

Alexa Dectis

 

“Coming to come to terms with it as a kid was a real struggle,” Alexa said, “especially when you realize that it’s not a question of whether or not it’s going to become worse, but an issue of the time will it be worse?”

Moving forward with hope for the future

Although she was able to walk by herself as a child, Alexa has relied upon the power wheelchair from early in her life. As the years passed, she tried to stay optimistic and found the inner strength to overcome external limitations as she got older.

“It was a very difficult thing to deal with as a youngster. However, as I grew older, I started to think, what can I do despite having SMA?”

As a kid, Alexa was outgoing and was a fan of exercising her imagination by playing pretend and acting. Her passion for adventure has led her to become an actor on the child stage, appearing in TV shows, films, and commercials.

Through hard work, determination, and perseverance as well as lots of encouragement from her family and friends – Alexa finished high school, moved away at first in order to go to college, and went to law school.

In law school, her symptoms began to become particularly alarming. She began to notice the fact that she was finding it increasingly difficult to raise her hands and be able to move them. At the at the same time, she was informed about an experimental treatment for SMA that was being tested in clinical trials. She began researching the most she could about this potential treatment and what it could be able to do for her.

A treatment alternative

In the year 2016, SPINRAZA(r) (nusinersen) 12 mg injection, for intrathecal use was the first-ever treatment that was approved by the U.S. Food and Drug Administration (FDA) for children and adults suffering from SMA. Check out the complete prescribing information along with important safety information for more details about SPINRAZA.

Today, Alexa remembers the exact moment when she learned of the announcement: “I was in the car when my mom called me to inform me that the medication I’d waited for all my life was finally cleared by FDA,” she recalled. “I immediately began crying and was unable to speak. My mother thought that the line was dead. However, I was so thrilled I couldn’t find any words to say.”

Prior to starting treatments, Alexa visited her neurologists to discuss the potential benefits and dangers of SPINRAZA and also reviewed the security information to ensure that the treatment was appropriate for her. The most common side effects of SPINRAZA include lower respiratory infections headache, fever vomiting back pain, as well as post-lumbar puncture symptoms. Monitoring is required to look for kidney damage and bleeding.

SPINRAZA is given intrathecally, under the guidance of healthcare professionals skilled in the procedure of punctures in the lumbar canal. SPINRAZA (recommended dose of 12 mg (5 milliliters) per dose) starts in four dosages. after four doses of loading, SPINRAZA is administered every four months. Alexa’s discussion with her doctor focused on the possibility of being capable of getting to the site of infusion and whether she could receive a puncture in the lumbar region.

“The day that SPINRAZA received approval was among the greatest days of my life”

The ability to access the SMA procedure for the very first time offered Alexa an opportunity to stop the progress of her illness.

“After over two decades with an illness that was debilitating it was so important to me that I finally had an option to treat my SMA with a medication that might assist me with my SMA,” she said. “Growing as a child, I longed to see the day when there was a treatment option accessible. The day that SPINRAZA was accepted was a great day. Truly one of the greatest moments of my life.”

Today, Alexa works as an entertainment lawyer for a Hollywood production company, making sure that young performers today get the support they need to navigate the business. Alexa is also chosen for Forbes’ 30 under 30 Hollywood & Entertainment list. Alexa is the first to admit that certain days are more enjoyable than others and there are times when she has to face challenges: “I love my job and the work I do. As an attorney for entertainment can be difficult at times however I don’t ever give up anything and try to do everything at my best abilities,” she said.

While Alexa isn’t letting her SMA determine her, it certainly has changed her into the person her character today is: confident and confident. The limitations SMA puts on her are an issue however they’ve also served as a motivational factor, allowing Alexa to make the most out of her life in the best way she’s able to. Alexa’s story is her own but others could have different experiences.

Alexa is a great example of this: “When I look at where I am today I’m so happy with the things I’ve accomplished,” she said. “There were times that I wondered about my abilities but I’ve always been determined to go on. I’m thankful for the opportunity to have a treatment such as SPINRAZA.”

INDICATION

SPINRAZA(r) (nusinersen) can be described as a prescribed medicine that is used to treat spinal muscle atrophy (SMA) in both pediatric and adult patients.

Important Security Information

A higher risk of bleeding-related complications is observed following the taking of similar medicines. Your healthcare provider should run blood tests prior to beginning the treatment using SPINRAZA and at the time of every dose to check for any indications of the risk. Contact your doctor if there is unexpected bleeding happens risks of increased kidney damage, which could lead to fatal acute kidney inflammation, which has been observed following the administration of similar medications. Your doctor should conduct urine tests prior to beginning treatments with SPINRAZA and prior to every dose to check for any indications of this risk.

The most frequently reported negative effects that can be triggered by SPINRAZA are lower respiratory infections and constipation, fever nausea, headache, back pain, and post-lumbar puncture disorder.

These aren’t all the possible side effects that SPINRAZA can cause. Contact your physician to get medical advice on adverse effects. You can report any side effects to the FDA at 1-800-FDA-1088.

Prior to taking the drug SPINRAZA to inform your doctor if you are expecting or planning to be pregnant.

See the full Prescription Information.

The information provided isn’t meant to replace your discussions with your physician.