Carlisle Aajay

In November 2016 Carlisle was in the middle of a normal day in Kindergarten.  His teacher was trying to get his attention and noticed that he simply was not responding to her.  At first she thought maybe he is ignoring her (and doing a really good job of it) then she realized that something wasn’t quite right.  His eyes showed that his pupils were dilated to the fullest extent and that he was experiencing some sort of “event”.  She notified the nurse who in turn notified Candace.  We were soon informed that this is a type of seizure called Complex Partial Seizures.  Oddly enough my grandfather used to have the same type of seizure so I was familiar with these types. We were referred to a pediatric neurologist and he blew us off stating that he didn’t want to put him on any meds at this time since this was a “one time event”.  We will now fast forward to March 17th, 2017 and a normal day while riding in the car Candace asked Carlisle what he wanted to eat because he had a good week in school and it was his choice to where they would celebrate by going to dinner of his choice.  Carlisle did not answer so she was able to turn around and noticed that he was slumped over in the car having another seizure.  She pulled over and sat with him while he “went through this event” and we carried him straight to Galisano’s Childrens Hospital in Fort Myers.  He was admitted and stayed there for 5 days.  They ran test after test and found that he also has a condition known as Chiari Malformation.   They found that Carlisle is also having these seizures while he sleeps.  We met with a Neurosurgeon in Miami to find that the Chiari Malformation is not what is causing his seizures but will need annual follow up appointments to monitor this condition.  At this time Carlisle is on the highest dose of medication he can be on to keep the seizures under control, but nothing seems to be working.  They are coming more often.  He is having worsening side effects from them and each time he has one it takes him a little longer to “bounce back”.  He has lost significant weight and as I put it has lost the “twinkle in his eyes”. 

I am asking first and foremost that you please keep Carlisle in your healing prayers and all of us in your prayers of strength and understanding as we continue to have many appointments to try and get him better.  He had another appointment the with head of Pediatric  Neurosurgury  at John Hopkins Children’s Hospital in Tampa to see what we can do to treat his condition.   We were informed that he has to have surgery on his brain to treat the Chiari Malformation.  Hopefully this will take some of the pressure off of his brain and possibly stop the seizures.  There is no guarantee that the seizures will stop, but the Chiari will be treated.   Secondly, I am humbly asking for any sort of donation you would be willing to extend to help with the day to day expenses that come along with missed work, doctor’s appointments, special diet, medications, etc.  Candace is constantly having to take time off or miss work due to the school calling to inform us that he has had another seizure and they can’t get him to bounce back to his normal self.  This happened on the first week of school and was the longest seizure of them all and he spent the rest of the entire day and night in the hospital.  His surgery is scheduled for August 8th.  She will need to be in Tampa for possibly a week to be with Carlisle and depending on what they need to do with him his care afterward may involve her having to take some more time off. 

Carlisle is so full of love and joy.  He is his mommy’s first true love, his brother’s best friend, and a huge part of my heart.  He brings a wonderful light to anyone that gets to be loved by him and loves back with all his heart.  He has an energy that lights up a room and keeps all around him going. 

Thank you all for taking the time to read our little story and again we appreciate you and all your loving thoughts and prayers.  <3

Donations ()

  • Richard Lett 
    • $300 
    • 31 mos
  • Nicky Olivo Segura 
    • $25 
    • 31 mos
  • Lucy Barnes 
    • $20 
    • 31 mos
  • Norma and Joe Bailey 
    • $100 
    • 31 mos
  • William Connell 
    • $100 
    • 31 mos
See all

Organizer

Victoria Norris Bassols 
Organizer
Port Charlotte, FL
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