Please help Alina win against Dravet Syndrome

PLEASE HELP SUPPORT ALINA’S FIGHT AGAINST RARE Scn1a DISORDER!

Our whole family has been devastated by the worst news any parent could ever receive. 

Please know that the story you are about to read is deeply personal and very difficult to write about for Alina’s parents, Cindy and Al Lapointe.  Prayers for their courage and immense love for their baby girl!

Alina’s story, (in Mommy and Daddy’s words)

“Alina was born a healthy, happy and oh so beautiful baby girl on August 25th 2019. 

She hardly ever cried and everything in our lives was perfect.  Just days after Christmas and Alina turning 4 months, she had a seizure that only affected one side of her body and lasted 1 minute followed by another seizure on the same side that lasted longer.  Alina was rushed to hospital for a full medical work up including a head ultrasound. Everything appeared normal.  We were told that she had myoclonic jerks and that it shouldn’t happen again.


A couple of weeks later she had another seizure that lasted 30 minutes.  It started on one side of the body then it affected her whole body.  Another medical work up was done and again, everything appeared to be normal.  At this time, we were told that these were common jerks in infancy that would continue into her toddler years and stop by age 5 and that they were not seizures.

Another two weeks went by and Alina had the worst seizure yet, it lasted 30 minutes and she was unable to move her legs but could move her arms and cry.  She had what is known as Todd’s paralysis.  Back to the hospital we went and now with the seizure on video.  After 3 long months, it was finally confirmed that Alina was indeed having seizures.

We requested a referral to Toronto and our videos were emailed to Sick Kid’s Hospital and it was confirmed that she was having seizures.  They prescribed Alina 2 medications:  Ativan to stop a seizure after 3 minutes and a prescription for Clobazam (benzodiazepine).  We were now placed on a waiting list to speak with a neurologist at Sick Kids.  Our baby girl kept having seizures once a month and sometimes twice a month where we treated her with the Ativan, but they still lasted 15-20 minutes with many more 911 calls and hospital stays.

We finally virtually spoke with Sick Kids in May, 2020 and they said it was either a scar on her brain or something genetic.  They prescribed her a third medication Carbamazepine which we know now that it is the worst medication for a Scn1a disorder. Three days on this medication and she had a seizure then the following week she had two more.  The neurologist told us he was not concerned about the first onset seizure but as more seizures occurred he told us to stop Carbamazepine and he wanted to see her immediately.  Alina needed to get better first before we could travel.  Once again we were back in Sudbury hospital where they did more blood work, a COVID test because Alina had a fever and a catheter to collect urine.  :( Again, all test were normal and we were sent home.

We travelled to Toronto in June 2020 for an EEG and a genetic blood test.  The EEG found slowing in the front temporal lobe that comes and goes.  As of right now, Alina is on Clobazam since March and a higher does has been increased twice.

In mid July, we received the most  heartbreaking and devastating news that Alina has Scn1a seizure disorder that it is classified at the severe end.  Even worst news is the fact that there is no cure for this disorder, only medication that will help to reduce the amount and severity of her seizures. We were told by the neurologist to get in contact with resources Alina will need and to celebrate everyday that she’s with us!  As parents, this is a nightmare come true.

In time, Alina will develop Dravet Syndrome which will cause her to lose cognitive functioning and motor skills, she will require round the clock care for the rest of her life.  If things could not get worst, they do, the most severe outcome is death from “status epilepticus” or SUDEP (sudden unexpected death in epilepsy).

Alina is sweet, very loving and gives the best hugs ever!  She’s smart, tough and makes us laugh all the time.  She’s a very happy baby with a strong personality and nothing can stop her from playing and learning new skills.  She amazes us everyday with her eagerness to do more for herself.  She loves all kinds of books, being sang to, read to and she cuddles with her teddy every night.  Everyday we watch her favourite cartoon Baby Bum and watch her smile and laugh.  She loves crawling around and getting us to chase her, she’ll speed up and laugh before we reach her.  It’s the cutest thing!  We love everything about Alina,  she has unspoken love that’s priceless, she brightens our days and makes us smile all the time.  We’re grateful to have her and very proud of her.  In spite of these difficult times, she shows us how strong she is not just by smiling at us but also at how fast she wants to bounce back and enjoy life. She’s a trooper and a fighter!”



Just last week, Alina had a seizure that lasted over two hours and she needed life saving support from a team of nurses and doctors! :(



Cindy and Al (and all family members) are determined to do whatever it takes to get the treatment Alina needs to preserve her condition and her quality of life.  In saying that, their family has a very long, difficult and unknown road ahead of them.

We are appealing to the community at large, associates, organizations, friends, family and anyone who wishes to help.  There are so many costs associated to this illness that are not covered by OHIP, please help to alleviate some of the financial pressure they will inevitably face in the future. (costs related to services, treatments not covered, time away from work, specialized care and medical equipment, etc…) Alina’s devoted father usually works out of town and will need to be home more often to support his beautiful family.  Cindy will be devoting all of her time to her daughters, she will not be returning to work, let’s please help them be together for their family.

On a good note, Cindy and Al are expecting their second child, a baby girl named Hanna!  We can’t wait to meet her! ❤️❤️❤️

We understand the devastating financial difficulties created by COVID and we greatly appreciate any contributions and prayers.  If you can’t contribute, PLEASE, PLEASE, share over and over again so we can spread the word.  Please use any means necessary to make this go viral!