PRINCESS JASMINE

A pretty name for a beautiful girl named  Jasmine.  I met her mother, Dominique, on Google+ after starting a community for EPILEPSY. After talking to Dominique online and feeling all the love a mom and the rest of the family has for their “princess”, I had to write about them.

Jasmine has Dravet Syndrome.  Dravet Syndrome is another form of seizures that begin at infancy.  It is also called Severe Myoclonic Epilepsy of Infancy.  Patients have frequent and poor control of their seizures, delay in development, and there is a higher rate of Sudden Unexplained Death in Epilepsy (SUDEP) with Dravet Syndrome.  More information at, http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome.

Jasmine’s seizures started when she was four months old.  Every year the seizures would
get worse.  Shaking and if she was standing, she would fall to the floor.  There would be as many as 20-50 grand mal seizures a day.  After seeing Jasmine go through this for 12 years and multiple doctors telling the family they didn’t know what was wrong.  Finally a doctor they saw knew what the diagnosis was.  In 2012, Jasmine was 13, surgery was the answer.  The answer was removing the corpus callosum.  The corpus callosum connects the left and right side of the brain.

During the surgery, the doctors lost Jasmine three times.  Dominique said it was by the grace of God and prayer that brought her back.  The doctors said that Jasmine might not walk or talk after the surgery.  She proved them wrong!  She has a wheelchair she uses when she hurts while walking, and can talk.  She has different forms of seizures and now 15-20 a day, not as many as 50. Dominique still worries about the seizures that occur during the night.  I wish people would understand that epilepsy during the night can kill during
the night.

Princess Jasmine would have a great day without having a seizure, and singing in church. The next day have 15, but still have a smile on her face.  Praying to God and putting Jasmine in God’s hands, God will watch over her, said Dominique.  Jasmine didn’t have to go to the hospital.  Doing great while having therapy, Jasmine went to SCHOOL in December in 2014!  SHE NEVER GIVES UP!

After never giving up, January 2015 was another month that was a horrible way to start the New Year.  Finding a bleed in her brain, after surgery they were able stop the bleed.  Jasmine being strong, was able to start physical therapy by the end of January.  A fighter that never gives up!  By October 2015, The seizures didn’t get better.  By November, another visit to the hospital.  Dominique says, “Dravet is no joke our children need a cure…”

I bet you can guess.  December comes and Jasmine can celebrate Christmas out of the hospital!  Visiting Santa and spending time with her family.  The family wants to find a cure!  They have a group of people raising money called Dreams On Wings.

I am sorry this is the longest story of people with epilepsy.  Jasmine and her family touch my heart.  I cry with the good and the bad times.

I want to end the with the happiest and most beautiful picture of a PRINCESS.  This will bring tears of joy and happiness!

PAINTING WITH A DIFFERENT VIEW

     After having epilepsy since he was two and getting Lyme Disease when he was a teenager, John Bramblitt slowly started losing his sight into colorful and detailed fingertips.  John is a well known artist.  He has been interviewed by Katie Couric and highlighted on the other TV stations.  John has also wrote a book  SHOUTING IN THE DARK.

     John says in the "Huffington Post", "because oil paints are made from different substances they have a viscosity and texture that varies slightly from color to color."  Only knowing to look at the different shades of colors, I would not have known that there would be a way to feel the difference until I met John on Facebook.

  http://www.huffingtonpost.com/2015/04/22/painter-john-bramblitt_n_7101902.html

     With his inspiration coming from music, John is able to turn sounds into colors.  This is called synesthesia.  I think this would be a great way to relax for me.  Sitting back, listening to music, and look at colors.  Can I be jealous about seeing the color of music, John?                                                                                              Another wonderful story that touched my heart was when the Huffington Post wrote about the birth of his son.

(http://www.huffingtonpost.com/2015/04/22/painter-john-bramblitt_n_7101902.html)

     John was able to touch and "see" in detail his face.  Above all he was able to "feel" his first breath. Think about the way he explained "seeing" his son for the first time.  I first looked to see what color of hair and eyes my daughter had.  I wanted to see how long her fingers were because I play the piano.  I never stopped to think about touching her face to know how soft her cheeks felt, or to touch the top of her head to find out what her hair felt like.  Thinking about this opened my eyes.

     I wanted to share another amazing story about how we overcome epilepsy!  Not just wanting to talk about it, but using your amazing ability to tell the whole world!  John travels the world selling and showing his artwork.

A Mother’s Story

BY ROXANNE DAVENPORT ON OCTOBER 19, 2015 • ( 1 COMMENT )

A beautiful baby boy was born. His name was Avery. Changing diapers, nighttime feedings,and “ma ma” “da da”. Then come the “terrible twos”. Not the regular “terrible twos”. I would call them the the “blessed twos”.

On January 9, 2005, while at day care. Avery started to having tonic clonic seizures. (http://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures) He was sent to the Emergency Room. While there he had to be resuscitated. Tonic Clonic seizures were called Grand Mal seizures. Avery would begin having myoclonic seizures. (http://www.epilepsy.com/learn/types-seizures/myoclonic-seizures)

Avery’s mother, Jennifer, could not let her emotions get the best of her. She had to become strong fast. She had a lot of questions she wanted answered. Epilepsy medicine is hard to keep track of when there is more than one. Think about giving medicine to a two year old. Some days were harder than others. Side effects were hair loss and one caused short term memory loss.

Avery’s health started getting worse when he started having seizures during the middle of the night. Jennifer said she was blessed daily when she could spend time with Avery. The doctors said they didn’t know what they could do to help.

Jennifer found out about the Ketogenic Diet. (http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet) This diet helps for weight loss and epilepsy. This diet is similar to the Atkins Diet but more strict. They tried it. To make up for the weight loss, Avery had to drink heavy whipping cream, eat one part carbohydrates, and four part fat. Starting at two years old it was had. He had to give up some food that h
e liked.

Avery proved that strength was in his genes and that he could conquer anything! Give a ball and he will kick it, bat it, or catch it. Show him a wall and he will climb it.

After starting the Ketogenic diet the seizures during the day stopped. Not long afterwards the nightly seizures stopped. Finally the seizures stopped completely and Avery came off the Ketogenic diet.

The first thing that Avery asked for was a banana!