Most kids get up in the morning, have breakfast, watch cartoons, go to school and come home and play until it’s time for dinner.

Unfortunately this isn’t the case for 7 year old Charles. Every day he wakes up in pain, has to take multiple medications, and gets tired easily. His hands are now shaky and he is no longer able to write his name and has memory loss. Below you will find a full list of what is going on.

Update:

Charles is so sweet and loving. Seeing him struggling is the worst feeling right now. He wants to enjoy life so badly but with all of his complications it makes it hard.

I know a few people have asked what some struggles are so I’ll post them:
-pain at least 70% of the day(this is headaches, leg pain, abdominal pain, even his arms/hands at times)
-memory(he has a hard time remembering the simplest things-he can’t spell his name, the full alphabet-it seems to be short term memory)
-exhaustion(some days he needs naps-yes more than one some days-some says he can’t sleep no matter how exhausted he is)
-shortness of breath(just a little activity and he becomes short of breath)
-severe anxiety(the worst is when he has an appointment with a doctor he doesn’t see more than a couple times a year-this causes him to punch, kick, scream and panic so badly it’s heartbreaking)

There are numerous other things but trying to keep this as short as possible.

Charles has numerous appointments coming up as well as testing.
List of what he is due for:
-Endocrinology
-Genetics(22q and then regular Genetics-these are separate doctors)
-Gastroenterology
-Nutritionist
-ENT
-Neurodevelopmental Pediatrician
-Neurology
-Sleep Specialist
-Speech Genetics
-Dentist
-Ophthalmology
-Urology
-Allergy
Possibly Cardiology

We know there is a high chance of brain/spinal surgery but we won’t know for sure what will be needed until after his MRI. We are waiting for his Whole Exome Sequencing test to come back. That should be next month ????????.

There is so much going on but it would be a book so if you have any questions I’m always happy to answer.

Thank you so much for your prayers, donations and shares.

If you’re not comfortable with GFM you can also do CashApp:
$HeiserMassa

https://www.gofundme.com/f/mm87f-charles039-medical-fund?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer