My letter to Disney

To whom it may concern:

I have read the uproar on the new disability pass you guys will be rolling out in a few weeks, at your parks.  I just want to say, thank you for trying to take away the people who take advantage of the system and make people like us, who actually NEED it, look bad.  However, it now makes it so people like us, can not enjoy your parks!  

We are supposed to go to Disneyland and California Adventure RIGHT after this takes effect (Oct 11th) and now I am thinking twice because of my son and his ability to not be able to last long at disney.  I know you guys had an autism organization take place in helping you guys come to a conclusion of what kind of system to put in to place.  But let me just say, Autism is NOT the only disaibilty out there.  And if my son ONLY had autism I would be happy!  Let me tell you a little bit about him.

Jacob is a sweet 11 year old boy.  He has a love for life and is always laughing and smiling.  He was diagnosed with a terminal illness called Mitochondrial Disease...or Mito for short.  Because he has Mito, his body does not produce enough energy for his organs to run.  So when he uses energy to walk...or talk....he is taking away that energy that runs his organs in his body.  Just a simple meltdown will take away energy that is supposed to be running vital organs in his body.  He has major heat intolerance.  He can not be in the sun for very long.  He gets over heated (even when its NOT hot outside.  Being in the sun does the same thing) and when that happens, it is a trigger for his seizures.  So we can not be in the sun for too long or else he will start to have seizures and that takes away a LARGE part of his energy..  Mito has also caused Autism.  He has major anxiety when he is around large amounts of people.  He gets upset and then that takes away his energy.  He also has low muscle tone and can not walk more than a few feet.  It takes away his energy and he starts to feel so sick that he cant walk anymore.  So he is in a wheel chair.  And that isnt even HALF of what this awesome little boy goes through.  

Now let me tell you about last April.  We were able to go on a Make a Wish trip to DISNEYWORLD!  And let me tell you, I have NEVER seen this boy so happy, as I did those few days we were there.   Yes he got sick...Yes he "ran out of energy" but it was because we were making memories.  Memories that one day, will be all we have!  My son will not live to be married.  He wont live to go to college....who knows if he will live to be in high school.  But I will NEVER forget those memories that we had while on our make a wish trip.  We were able to go to the parks AND we were able to have a good rest time so that we could have more fun together.  Do you know why?  Its because we were able to rest when we needed, we were able to get on rides faster and not have to sit in the sun.  It was because we were able to be away from crowds.  It was because we had the disability pass.  Without it, we probably would of been at the park for 20-30 min and then had to leave because he would of had a seizure, or he would of had a meltdown, or he would of just been so sick and unhappy it wouldn't be worth it at all!!  But instead, you made this child who lives in pain and sickness EVERY DAY have a great time with his family.  A trip that he still talks about every day.  So we were SO EXCITED when we found out we had to go to Southern California for an event for his service dog.  We just had to go back to Disney!!  We had so much fun and knew that we could make even more memories!!  But then we found out that you are taking away his right to be able to enjoy the park.  Yes, you have a system in place that could help SOME PEOPLE...but not all.  Not my son!  You say that we can only ride 1 ride per pass....and we could just walk around and watch a parade or something while we wait for that time.  Well let me tell you....that is a good way for us to leave ASAP!  It is sad that he has to waist all his energy on "walking around the park" wnen we could be riding the rides...the part of the park that gives him that smile we try to find.  

I just beg you guys to PLEASE reconsider what you are doing to ALL disability's.  Not just 1.  We really want to go to Disney on the 11th.  We were planning on going to the Halloween party.  Halloween is Jacobs favorite time of the year and we just know this is going to make his whole year!  We just know that going to this will give us some great memories with him.  And we know that this will make him forget about being sick...for at least a few hours.  And carsland for my younger son.  The brother who always gets put aside because of his big brothers needs.  The younger brother who had to grow up fast because he knows more about hospitals and procedures than most adults don't know about.  He deserves to have fun just as much as his older brother does.  He has had to sacrifice so much!  Tyler LOVES cars.  And its his dream to meet lightning McQueen.  And to see cars land.  And we were so excited to be able to see HIS smile...make memories with HIM!  But we cant, unless his big brother can come too.  So PLEASE PLEASE PLEASE, hear our plea!!  Please make it so that we can have fun too!!

Thanks for listening

Britney and Tom Priestley

A day in the life of Jacob!

Because its Mitochondrial Disease Awareness week, I thought I would do a little "day in the life" and show you what a pretty typical day is for Jacob.  I really think its important for people to show how complicated our lives are.

Mornings usually start at different times.  Sometimes he is up at 6 am or sometimes he is up at 8 am and any time in between.  It depends on if Zelda woke him up, a brother woke him up, a stomach pain woke him up, or whatever.  Like this morning he was up around 730 and woke up with a horrendous stomach pain.

So when Jacob wakes up, I am  usually in the midst of getting Tyler ready and off to school.  So we take Tyler to school and then come back home and he has a little bit of tv watching time.  This is time for me to get his breakfast and his meds ready for the day.

Before he eats breakfast he has to take some meds.  There are a few meds he has to take 30 min before he eats.  So these are his before breakfast meds that he has.

                               This is how he takes his meds...mostly.  Because he likes to throw up his meds every time he gets them by mouth...this is the best way for him.

After he gets his meds I let him get on the computer and play for a little bit while I get breakfast ready and his other morning meds.  He is usually there for about 30-45 min (dont mind zeldas crazy scary eyes)

We love smoothies and I make them every morning for him.  I put MORE meds in here for him too.  I love hiding stuff in things that he will eat or drink and never know its full of medicine for him.  We put his laxatives in here most of the time.

After his smoothie is made and his breakfast has been eaten, we go for his 2nd set of morning meds.  These ones are for his mitochondrial disease called his "mito cocktail" these are compounded meds.  So they have at least 2-3 different meds mixed together.  He also has Co q 10 gummies, and pedialyte to flush his tube.

After breakfast its time to hook him up to his fluids.  I go and get my supplies which are a bottle of pedialyte and his bags to put it into.  

This is another look at his machine and supplies 

After that, its time to hook him up!  I get the tube that we kept in from giving him his meds and we put the end of the bag into the tube and push run on his machine, and he is done!

 Next, its time to hook him up to his pulse ox machine.  We have to go keep this continuously throughout the day to check his heart rate and his oxygen sats.

Now its time to start on school.   We see what we have to do for the day and start on the easiest one...haha

We did school for about 30 min and then he started to not feel good and get really tired.  So we had to take a break.

We took a break for about 30 min and then went back and did school for about 10 more min before he was not feeling good at all and was having a hard time talking and kept trying to fall asleep.  So we did another break....and that was all we could do.  

It is lunch time now.  He ate lunch and then we had therapy!

We went to therapy but he was really struggling staying awake and up and focused.  He kept saying he felt like he was gonna throw up, and his throat hurt, and his legs hurt.  So therapy was pretty tough.  

No suprise here...we got home and he went right to sleep!  This is about 12:30 and he will sleep until I wake him up around 2.  I have to go pick up Tyler from school so I had to wake him up to come with me.

After we get Tyler we come home and try to do a little more school while Tyler does his homework.  They do their stuff together and I clean up a little bit and try to get dinner started.

At 4 we go and pick up Tom and I run to the grocery store to get what I need for dinner. 

Around 530, its time to get ready for bed.  So he takes a bath and gets ready.  He watches tv for about 30 min or so.

And then at 630 he gets his 2nd dose of meds.  He gets all the above meds again.  And at this time we also fill up his bag again to get ready for bed.  He has to be hooked up at bedtime so once again, we fill it up with pedalyte and hook him up to the machine and around 7 he goes to bed and we start it all over again!

Now this is a typical "non busy" day.  Just think on a weekly basis...we have doctor appts to add to that, we have more therapy appts, we have appts with state people for his services or we have a day where we go out and have fun!  

I hope you enjoyed our "day in the life of Jacob!!"