I am going to share this with all of you for those of you new to this page or dont really know Emma...so here goes...the end of February we noticed this little lady walking like she had been up all night drinking...not cool...and me being the paranoid one that I am...took her to the doctor immediately...they told me she had fluid on her ears...about 2 weeks later she had an ear infection, took an antibiotic that made her completely stop walking, and start crawling and by the end of the 10 day antibiotic she wasnt mobile at all...she fell off the couch so I took her to Wyandot Memorial Hospital and they ran a CT scan to rule out concussions, tumors...and they found demilination on her brain...so they sent us to Nationwide Childrens in Columbus ohio...lets just say I have NOTHING and I mean NOTHING nice to say about this hospital...they made us wait a MONTH for an MRI...and then she told us that they didnt have a definite diagnosis but it was definitely Leukodystrophy...(leuka what?) so she told us to take our Emma home and watch her die...and I told her where to go and how to get there...called her drs office, and DEMANDED a referral to Cleveland Clinic...and we were there that Following Wednesday (it is now beginning of May) and That Friday the Dr got the bloodwork back to confirm it was Krabbe and he said there was hope...but its in Pittsburgh...we needless to say said lets go to Pittsburgh...we spoke with Dr. Escolar on Saturday less than 24 hours after her Krabbe diagnosis...and that following Wednesday (before memorial day) she was in Pittsburgh meeting with Dr. E and her amazing team...She was admitted on June 11th, and underwent chemotherapy on and off for 14 days and received a cord blood transplant on June 26th...I have heard it from a couple of people (okay more than a couple) but they have all said the same thing...we have never seen a patient diagnosed this early in the disease... and I am thinking to myself...well if what nationwide put us through waiting a month for an MRI is any indication of what others go through NO WONDER kids dont get diagnosed sooner...she had LATE onset of Krabbe which I was told It is the lesser of the evils...Dr Escolar also told us that with the cord blood transplant and the right therapy...we can not UNDO the damage, but it will not harm her anymore...it will stop progression, and with the right forms of therapy, she can regain 90 to 95% of her abilities back...now that being said...we have come a LONG way...granted...and she still has battles in front of her...but I have trouble expressing how blessed we are that we caught the Krabbe when we did...because we know that her case is as rare as the disease...we dont get to read about very many Krabbe success stories...and it is heart breaking and that doesnt even begin to describe it...Krabbe is very real...and watching your daughter muscle spasm on and off for 10 minutes 3 to 4 times a day it SUCKS...and all you can do is move her muscles, hold her tight and pray they stop...but I tell you what...you will NEVER hear me complain...because I know it can be so much worse...and I pray nightly that they find a cure for Krabbe or a least a way to regrow myelin that protects nerves that cause it all regrow nerves not really sure...but I will settle for a Krabbe Cure...So that is Emmas story...
Posted on: Wed, 10 Dec 2014 03:48:07 +0000
Trending Topics
Recently Viewed Topics
© 2015