Constitutional mismatch repair deficiency (CMMRD) syndrome: Anyone?

Hello @amrarezaal Oh my goodness, I am so sorry for what your little grandson and certainly your entire family is going through. I can’t even imagine how heartbreaking to see your little grand baby with leukemia and now a brain tumor.
I wasn’t familiar with CMMRD but I found this article from St Judes talking about Constitutional Mismatch Repair Deficiency Syndrome (CMMRD).
https://www.stjude.org/care-treatment/treatment/genetic-syndromes/constitutional-mismatch-repair-deficiency.html
My heart goes out to all of you as this looks to be a very complicated condition and a lot to process.
Is your little grandson being treated at a larger teaching or research hosptial? Often in larger facilities there are social workers and counselors who can help you and your family process and cope with the information.
What have his doctors discussed for longterm treatments for him?

@loribmt
Thanks for your kind words and the article , I will read it:
Riley hospital in Indianapolis is where most of his stuff is done at but his team of doctors are from there, Mayo Clinic, Chicago and Canada and they aren’t sure what to do yet because there’s very little research on his multiple conditions.
I hope to get the opportunity to see what kind of support there is from the hospital, just to navigate this whole situation.

@amrarezaal It sounds like your grandson has quite an impressive medical team behind him and his family. Wishing your little buddy all the best. It has to be a challenge for all of you to be brave for him.

Now that you’ve posted in the forum, hopefully there are other members out there who have more information for you.
I’d really like to follow his journey along with you if you don’t mind. Would you keep me posted please?

Yes I definitely will keep you posted and I really appreciate you reaching out to me