Hello, my name is Stephanie. I have a daughter who is now 17 years old and has been diagnosed with several chronic conditions, which include chiari malformation, syringomyelia, craniocervical instability, POTS, dysautonomia, hEDS, pelvic floor dysfunction and now her large intestines are not working. We live in MS but have to travel far and wide for treatment. We leave for NY tomorrow for a week of testing on her stomach and small intestines to see if those organs are working correctly. The doctors said she may have to have an iliostomy and she does have to have another brain surgery and redo her craniocervical fusion because the last fusion failed. I have 2 other children a 19 yr old boy and 8 yr old boy and i am a nurse. I am so stressed out trying to balance caring for all 3 of my children, medical appts and costs, working, and homeschooling my daughter and my 8 yr old son. I hope everyone has a blessed day


Hello Stephanie,

It’s great to hear from you!

This is a new community with just a few members at the moment but hopefully all very much in the same situation as you – having one or more children whom we worry about far more than others get, whose needs are great and having to balance so many things – while each child’s needs are different.

I’m hoping we shall get a few new members this week after I published a news article across our other support groups yesterday.



I’d also like to extend a warm welcome to five new members, @Lucy in North Carolina, @Timonsmom in Rhode Island, @Lynn in Tennessee, @Maine from Canada and @David in California who have joined very recently. It would be good if you could introduce yourselves slightly.

It is great to welcome new members to the community – it feels like we are nearing the point where conversations can happen!

It is really good to have you join.

I need to fix something about your profiles because some of the helpful information for other users isn’t showing. I’ll fix that and then you’ll get to know each other better.

Meanwhile, do talk among yourselves…

Best wishes,

One of the ModSupport team.

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NY has wonderful doctors, specialists, and top hospitals. That’s a good thing. Thinking of you…

I hope they can figure out how to make her feel better. The worse park about NY is all the walking she has to do and how loud and bumpy the subways are. She is hurting so bad today. I thought about bringing her wheelchair but i dont think will work either with all the stairs we have to go up and down.

The buses are wheelchair accessible, quiet, and air-conditioned.

We might have to do that for her next appt. Dr Greenfield thinks she needs a revision surgery for her craniocervical fusion that didnt work and another chairi decompression. We would be in NY for 2 -3 weeks

It’s a safe and civilized option. It just takes longer because it makes more stops. Let us know when you are back. I am in NY and if I can guide you in any manner, I will gladly do so.

We are here right now. My daughter is having a transenteric motility study and the test is Monday-Friday.

Do you know anywhere that has cheaper rooms near the weill cornell hospital?

Download and try the app HotelTonight. Heard good things about it. They partner with hotels and have “Daily Drop” deals.

Ok. Thank you i do appreciate your help.

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Thank you for the warm welcome! My name is Lucy and I live in Western NC. My youngest daughter, Hartley, is 25 years old. She has hydrocephalus, Complete Agenesis of the Corpus Callosum, and Gorlin Syndrome. She also has hearing loss and was recently fitted with a BAHA (bone anchored hearing aid) and that has been a great improvement for her. We travel to UNC Chapel Hill about 4 hours every 8-10 weeks for her appointments for her Gorlin Syndrome. She develops basal cell cancers that have to be treated/removed. She is very independent, but not to the point of being able to live on her own. After she finished HS, she attended ClemsonLIFE for 2 years and did very well. This is a program for young adults with disabilities who learn independent living skills. There are many programs like it across the US. She stayed in Clemson after she finished the program and lived in an apartment with a traditional student. She was unable to find a job, but she did enjoy the social aspect. We brought her home for in March 2020 when COVID hit and she has continued to stay with us in our basement apartment. She has been looking for a job, but no such luck yet. We live in a very small and rural community with very limited resources. We are currently trying to plan for the future, but that is a challenge. Hard conversations. I look forward to being a part of this community!


Nice to meet you Lucy.

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Welcome again! It’s great to have you join us and I’m hoping to learn a lot.

We have five members of the ModSupport team who will look after the community while you all find your feet – @tj1, Sharon, Merl, Mark and me. In our case, we are each patients.

As for me, I discovered about 7 years ago that I had a rare condition called an arteriovenous malformation in my brain, which basically presents with an increased stroke risk. I joined one of the Ben’s Friends communities and it has been great for me to find people in very much the same position – to go through all of the same or similar trials together. I’m hoping this is exactly what you will find here: that while the conditions that your children have may vary wildly, the challenges presented will be similar and you’re able to support each other, going through the same as each other.

I have found being part of Ben’s Friends very educational, as well as supportive, and I’m already learning lots, for example about things like ClemsonLIFE.

It’s great to have you on board.

Very best wishes,


Just wanted to say hi!

I’m a patient and a mom. I have psoriatic arthritis plus. My daughter is 21 and has diagnoses of epilepsy and juvenile arthritis. We definitely understand what you’re dealing with.


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Nice to meet you Sharon. Thank you sometimes I feel so alone in all of this.

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Checking in with you.

We are doing ok. Just very stressed out waiting for the test results to come back. We still havent heard anything.