Hey there! I’m Meranda and I’m ultimately starting this to support my son Dexter and his medical journey. To start things off in November of 2022 Dex had waken up unable to use his legs. After going to convenient care and following up with orthopedics regarding the situation, we waited six weeks to declare the problem happening to not be transient synovitis. After the six weeks had passed we were advised to go to St. Louis children’s hospital through ER as his symptoms hadn’t improved. After being seen they immediately admitted Dex for 5 days and had him diagnosed with polyarticular juvenile idiopathic arthritis. As they were sure that’s what he had they were concerned about the severity of his case due to the waiting time because it effects behind your eyes as well. After receiving the MRI results they noticed how significant the inflammation was behind his eyes. With all that being said St Louis became Dexs Rheumatologist specialist location. After finding out everything that needed to be targeted is when his treatment all began. Dexter has been on weekly injections to help stabilize his JIA and keep him moving freely. He was receiving a biweekly injection to work with the weekly but stopped due to him no longer reacting. Now Dex receives a monthly infusion, after failing two other trails, to work with his injection towards his JIA and also help with his eyes. Dex had went from scooting around, to using a walker, to being able to walk again.

After getting his JIA under control is when the inflammation behind his eyes started to not keep stable.

Dexters eye condition is the most concerning thing we have been dealing with through this whole journey of his. Not only was the swelling significant behind his eyes, it was also on top and in his eyes. Dexter has been treated aggressively for bilateral ocular hypertension, anterior uveitis and posterior synechiae in both eyes. For a while we were able to keep his eyes “calm” but doing so with 6 different eye drops being administered multiple times daily. Resulting in these condition left Dex already with glaucoma and corticosteroids induced cataracts. On August 6th we had our first appointment in Chicago at Northwestern Medical University to seek further help regarding his sight. At his first appointment we were told he was definitely going to need surgery in his right eye as we haven’t been able to keep it “calm” for almost a year now. We left that appointment on the list for surgery and we’re awaiting a call to have a pre-op appointment with his surgeon. On September 1st Dex was taken to our local emergency room due to a 103 fever and severe pain in his right eye, which he has NEVER experienced before during all this. After getting him medicated and calm, 6 hours later we were able to leave the ER. The next day we followed up with his PCP and we’re in touch with Chicago. Immediately Dex was put on the schedule for 9/11. The next four days he was experiencing high fever and eye pain due to the pressure everywhere in his eye. We were able to get him fever free and they admitted him for his eye operation. Dexter had trabeculectomy performed with shunt installed due to the severity of scar tissue behind his eye. With the inflammation being so bad they also relied on donor mesh for lining his shunt, and tissue for lining the top. His pressures have been fluctuating lowly since and experiencing blurry vision since, hopefully it will “settle” but could be something permanent.

Dex is being seen weekly in Chicago since his operation and will continue to be seen as so because the healing process is taking longer than expected. We are uncertain when he will need to be treated this way for his left eye but they are completely taking over his eye care leaving us with no local doctors besides his PCP now.

Everything medically put aside, Dexter is one of the most kind, gentle, caring and loving little boys. Nothing these past 3 years have kept his spirits down, even when in pain and not feeling good overall I always hear him say “I kind of want to do something fun”. Dexter loves going on walks in the forest, visiting the koi pond at Union Station in STL, the butterfly house at Navy Pier in Chicago, playing any type of game and mostly cuddling with his cat Bella and dog Jax.

A month now Dex has been homebound and I’ve had to take a leave of absence from work to make sure he heals and stays healthy. All the money raised will go towards gas for our continued trips to Chicago and STL. Towards hotel stays if needed as sometimes we have appointments two days in a row and the Ronald McDonald house will house us only during operation stays and admits. Parking garages, we get vouchers but lately our voucher garages have been full and needed to pay full price at other garages blocks away.

Dexter is so full of life and is going to do big things one day ❤️