Carter’s Possible diagnosis

[Anonymous]

Anne Marie,

I read some of the pamplet. Will the test they are doing tell you which form he has, (if he has MPS-1)?

I dreamt of you and Carter all night last night and every time I woke up I was crying and praying for him. I will pray every day of these long 7 weeks (and I’m sure many of the other moms here will too) that the test will turn out to be negative.

ndrose2007-6-7 16:9:35

[Anonymous]

Ann Marie,

I am just reading this. Iam so sorry This really breaks my heart. You, Carter and the rest of your family will be in my daily prayers. i will praying really hard those results come back negative.

[Anonymous]

Again, Ann Marie my heart aches for you. How scared and sad you must feel. I can’t believe it takes so long for them to get test results back. I’ll continue to pray the diagnosis is better than what you fear. In the meantime, is there any type of support available to you?

I hope this does not come off the wrong way, but I have to admit that I was down this morning because Seth’s reflux is back and I am so tired of it but then I saw this post and I realized that if all I ever have to deal with is the reflux then we should count ourselves fortunate.

God Bless and please keep us posted.

[Anonymous]

ann marie—i am crying for you—-and i know it doesn’t help anything. i don’t know if i can even put in to words the things i wish i could say. it is such a helpless feeling to know that there is something wrong with your child and you can’t take it away for them. there are times that being a parent is overwhelming because of the problems and illnesses you never expected would touch your life. please know that i care!!!!

[Anonymous]

i can’t figure out how to access the info——christine, what did you do to be able to read the pamphlet?

[Anonymous]

Hi all,

Again, thank you all so much.

They are thinking MPS – I.

You are all so thoughtful and I really do feel the support…..

I have so much more perspective at this moment of all the trivial things I thought were so important and they don’t mean squat!…

I spoke with the Dr. and she is going to try to call me in a few weeks just to give me status on the tests. Sometimes they come in quicker than the 7 weeks…. Hopefully it won’t be that long.

You are all so great..Thank you!!

Ann Marie

[Anonymous]

Oh, Christine, I think you need to have adobe reader to access the booklet. You can download it for free if you don’t have it…..

[Anonymous]

My heart is breaking for you, Ann Marie. Please let me know if there’s ANYTHING at all that I can do for you. I’ll continue to pray for Carter and for good news.

[Anonymous]

I am so sorry I just read this and I can’t help but cry. I can’t believe you are going thru this. You are a strong person and I will pray that the results come back negative.

[Anonymous]

Hold him tight Ann Marie. I know all of us are holding our little ones tight tonight. Draw strength from the incredible loving bond that you have with each other.

[Anonymous]

Ann Marie: i am not sure that i have the words to describe how devasting this feels. however, one thing is for sure and for certain — there are challenges that many people would crumble in the face of…you are one of the best, strongest, and most amazing mommas of them all, you will find answers to help carter, regardless of the outcome of the testing. please remember to catch your breath and treasure every moment.

i work for a biotech company that does work in facets of molecular human DNA therapies…i am going to dig around and see if there are any trials going on.

please know i am thinking of you guys. i am really sending much strength and love in your direction.

beck

[Anonymous]

Thanks, Becky, that would be great if you found something!

I think of you guys often and hope all is well with Hannah.

[Anonymous]

Ann Marie, my heart breaks for you…another online aquaintence of mine recently found out that her 8 month old daughter has a terminal disease (Krabbes Diseas) and I know she is still reeling from finding out. I’ll be praying that it was a false positive, and that the definitive test results come back sooner than the stated 7 weeks.

[Anonymous]

NEGATIVE for MPS!!!!!!!!!!!

We found out yesterday!!! We went to see the geneticist and got the results. She still is not convinced it isn’t a storage disorder, so we did xrays on his hands and spine as that is where the storage will typically begin and he is old enough she should see it. He was not happy about being held down and xray’d but he is OK. Better than a blood draw!

I am waiting the results of the x-rays today, and if they are clear, we can rule out storage disorders. It is still a long road, because then we are looking at whay syndrome it could be, but I need to just focus on one thing at a time. This is such good news!!!!!!

Carter got a medical walker from birth to three that he is starting to walk with. He can not stand on his own or anything, but he can move a bit with the walker and it makes him so much happier to have some independance.

I will let you know what the doc says when she calls today (hopefully today) with the xray results, but for now, I am basking in our fortune!!!!

Thank you all again, for being such a great source of support even when it is not reflux related. You are all the best!!!!!

Ann Marie

[Anonymous]

Oh Ann Marie, that is wonderful news!!! What a relief that the results came back negative. I’m so happy for you guys. Prayer is just amazing. I’ll continue to pray that the x-ray results are good and that they can figure out what his syndrome is. That’s great that he’s doing so well with the little walker! *BIG hug* Good luck, and keep us posted.

[Author]

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