Jace has wish granted

Jace Peterson (center), connects with his brother Justus while their mother looks on during a Make-A-Wish reveal last Tuesday at Popa T’s Restaurant in Dillon. A party for Jace turned in to news that he was going to Disney World. J.P. Plutt photo

 

Wish Assistants Gary and Daryl Little of Missoula were in Dillon last week to grant Jace Peterson his wish to go to Disney World.  The Make-A-Wish reveal occurred during a party at Papa T's Restaurant last Tuesday that was attended by family and friends of the seven-year-old.

In his letter, Jace noted that his favorite character is Barney.  Make-A-Wish has arranged for Jace to meet the character and then attend a show at Disney World.

There was a time when Jace's parents did not think such a trip was possible.  When he was just three months old Jace experienced his first seizure.  The events in those early days woud last from two to three hours.

"He would totally stop breathing and we would put him on life support and try to get the seizures to stop," said Jenny, Jace's mom.  

Jenny and Jesse Peterson were college sweethearts and elite athletes at Western Montana College.  Jenny played varsity basketball and volleyball, earning NAIA All-America status as a volleyball player.  Jess won back-to-back College National Finals steer wrestling championships and nearly qualified for the PRCA National Finals Rodeo. 

Jenny and Jesse most likely never thought about the challenges of raising a special needs child, but they have faced the challenge for seven years.  Jace suffers from the severe seizure disorder Dravet Syndrome.

"It is not like epilepsy where those siezures stop," described Jenny.  "These do not.  It is never totally controlled."

There is medication to control the seizures but with Dravet, medication affects each patient differently.  A medication that works for one patient may not work for another.

"He went through 15 different medications and of course, none of them worked," recalled Jenny.  "They just brought on lots of side effects.  You have to try and find the one that fits your child and try to control it the best you can."

The lives of the Peterson family changed for the better when Jace was three and a doctor put him on a new medication from France.  It turned out to be the magic elixir.  Jace takes the medication twice a day, every day.

"It made the other medicines more effective and his long status seizures stopped and we have been able to stop every seizure that he's had (with a special nasal spray) within one to five minutes," said Jenny.

The Peterson's could take a trip to Butte without worrying about carrying oxygen and other life saving supplies.

At the same time, the folks in Beaverhead County put on a benefit for the Peterson's to help them deal with the medical expenses associated with Jace's condition.

"That medication alone costs $1,000 a month so that community benefit has been a life saver to let us purchase that medicine," said Jenny.

Jenny and Jesse must be aware of certain conditions that will bring on a seizure for their second son.  Heat or over-activity can bring on a seizure.

Through all the trying times, Jenny says it is Jace's personality that makes the challenging times less stressful.

"He has such a wonderful personality," said the proud mother.  "When you don't understand something, he just puts his hands down and starts giggling.  He never gets made at you."

Jace's ability to communicate is limited.  His speech is "very delayed" according to Jenny, but she says he understands more than he can communicate.

Other children with a similar condition, can become frustrated with their inability to communicate and will sometimes throw a tantrum or become difficult as they deal with the frustration.  

Jesse is proactive in a forum for Dravet Syndrome and came across a family with a daughter with a condition similar to Jace.  They had been granted a Make-A-Wish trip and told Jesse how satisfying the experience was.  Jenny and Jesse considered the possibility and then submitted the application form.

The Peterson's will make their trip in November, a time of the year when the temperatures will be somewhat cooler and less likely to trigger a seizure.  Jace and his brother Justus as well as mom and dad will fly to Florida courtesy of Make-A-Wish.

"They take care of you because they know what it is like to have a special needs child," said Jenny.  "From what I understand, there is a village at the center for special needs children with a full-time medical staff and that's where we'll stay."

At Disney World Jace will get to meet his favorite character Barney and attend a Barney show. He gets special consideration where he can go to the front of lines for the different rides at the resort.

"He's always happy no matter what happens," said Jenny.  "He usually doesn't get to go to places like that.  IT is either to hot or too many people."