Cure for Connor- MPS II Hunter Syndrome

Cure for Connor- MPS II Hunter Syndrome Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Cure for Connor- MPS II Hunter Syndrome, Charitable organisation, 6621 Fannin Street, Houston, TX.

03/11/2026

Living it up like a king while he gets infusion today!

11/16/2025

We are discharge! Dad and Connor are heading home! Mom and sissy are going to grab that boy some donuts!!! 🍩

Video was from Friday when dad had him laughing!!!

We are still here. The most up to date plan is he will get his weekly elaprase infusion today. Surgery team stopped in...
11/13/2025

We are still here. The most up to date plan is he will get his weekly elaprase infusion today. Surgery team stopped in this morning to let me know they want 2-48 hour negative blood cultures AFTER the port was removed before they will place the new port. They are being extra careful so we are not going to wind up back in the same situation. We already have one 48 hour negative culture so they will draw another today. So that means Saturday is the earliest we could possibly get a new port. Once port is place we have to continue with IV antibiotics until the 19th. The plan was to send him home to do the IV but they would have to leave his port access so that there another kink into the plan. Once he finishes with IV antibiotics he will go to an oral antibiotic for sometime.

Anyway he is doing well, in good spirits, we are just bored and tired of looking at the same 4 walls. I’ll let everyone know if we have any major changes.

Thanks again for everyone jumping in to offer help. We are so grateful for everything. đź’ś

We are enjoying some snuggles with mom while we wait for breakfast.

11/11/2025

Hangout watching Paw Patrol and snacking on Lucky Charms!

Update: surgery is done and went well. They said it was boring other than they had to do an extra incision because his s...
11/11/2025

Update: surgery is done and went well. They said it was boring other than they had to do an extra incision because his skin was attached to the port. We like boring. So it took a little longer and they did have to go and do a regular intubation, but they still said it went very well. Thanks to everyone sending good vibes our way. đź’śđź’śđź’ś

They just started surgery to remove the port. Didn’t have time to prep much. We knew he was on the OR list for today, but didnt know a time. The nurse came in said it was time and off to pre-opt we went. He kept requesting me (mom) to sing Rudolph and donuts. They are also using a LMA for intubation so it doesn’t go past his vocal cords, which help with our anxiety for anesthesia.

Well the hospital staff decided it’s in his best interest to remove his port. Not sure when, they said it depends on th...
11/09/2025

Well the hospital staff decided it’s in his best interest to remove his port. Not sure when, they said it depends on the OR openings, we will be here for a longer stay. While this is not the news we wanted to hear, Connor is presenting well. He is eating well, acting like himself (until the staff come in, then he is mad and pushes them away) and has not fever since Thursday. Thank you all for those texting, calling tp check in, helping out with Hailey. We appreciate everyone. 💜💜

Update:He only slept from 3:30-6. His stomach kept him up again. We started on MiraLAX to help with GI. The port infi...
11/08/2025

Update:

He only slept from 3:30-6. His stomach kept him up again. We started on MiraLAX to help with GI. The port infiltrated last night and the area around it was swollen so they de-access him. The second port culture came back positive while the peripheral IV came back negative, so it’s definitely in the port. They are talking to you infectious disease to see if we can treat it with IV and antibiotics or we need to remove it. Don’t see us getting discharged anytime soon . He is in a better mood today, not pushing people away like he did last night.
Currently watching Paw Patrol in his bed.

Well, not the news we wanted. unfortunately, culture results came back that he does have a port infection so we are bac...
11/07/2025

Well, not the news we wanted. unfortunately, culture results came back that he does have a port infection so we are back in the ER so they acan admit him to the regular hospital for IV antibiotics. Not sure how long we’ll be here but he’s at least happy eating some chicken nuggets while we wait.

We are being discharged. But we’re not out the woods yet. All of his labs came back normal but they will run the port c...
11/06/2025

We are being discharged. But we’re not out the woods yet. All of his labs came back normal but they will run the port culture which takes over 24 hours. Doctors felt since his white blood count was not elevated, it should be a good sign that the port is not infected, but they will let us know in 24 to 48 hours.

Not how I envisioned spending my Thursday. Connor developed a fever after infusuon yesterday. Since there are no other ...
11/06/2025

Not how I envisioned spending my Thursday. Connor developed a fever after infusuon yesterday. Since there are no other symptoms (besides the ongoing GI issues) we were admitted to the ER to rule out a port infection. This marks his first fever since receiving the port seven years ago. It took four attempts and four nurses to access his port. Fortunately, Connor's spirits have lifted now that the blood draw procedures are complete. They also tested for flu, covid and RSV. This is the first time I would be relieved if the diagnosis were influenza. Crossing our fingers we do not have to get his port replaced.

Connor’s eye gaze AAC device has been approved and covered by insurance. It was delivered yesterday. We didnt get a ch...
10/22/2025

Connor’s eye gaze AAC device has been approved and covered by insurance. It was delivered yesterday. We didnt get a chance to set it up yesterday since our electricity kept flicking and we are under a water boil notice. Last night was crazy. Can’t wait to see what he to tell us!

09/08/2025

Big thank you to Keto Delights Lockhart for donating some chocolate covered pickles to our nonprofit booth Hunter Syndrome Foundation at the In a Pickle / Festival. Your chocolate pickles were a big help in bringing people to our booth on the rainy day. They were also very delicious. We are truly thankful. đź’śđź’śđź’ś

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6621 Fannin Street
Houston, TX
77030

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