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Danica Boni - An Adventure with Hurler's SyndromeJoin with us in our battle against the disorder affecting our daughter.
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Join with us in our battle against the disorder affecting our daughter.
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Danica Boni - An Adventure with Hurler's Syndrome: July 2009
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Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Thursday, July 30, 2009. We can not say how much fun it was to visit with everyone in San Diego. We stalked Guy's show "Diners, Drive-Ins, and Dives" with PJ and it was a blast. Then we got a tour of the military base and saw subs, carriers, and lots of different aircraft. Can not even tell you how much fun all of us had with the first day. Pie Eye you are awesome! He had a stroke in...
Danica Boni - An Adventure with Hurler's Syndrome: October 2008
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Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Wednesday, October 29, 2008. Dani is loving daycare now. It seems like all the kids get along pretty well. She really loves Ms. Macy (her teacher). They are having a pajama party for Halloween. I am sure she will have a blast especially since they are ordering Pizza (her favorite). Monday, October 06, 2008. Here they are . Subscribe to: Posts (Atom). View my complete profile.
Danica Boni - An Adventure with Hurler's Syndrome
http://danicaboni.blogspot.com/2010/08/gabe-ethan-and-dani-are-enjoying-their.html
Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Monday, August 09, 2010. Gabe is starting 8th grade, Ethan 6th, and Dani is in her last year at Pre-School. Next year we will have every school covered. IT HAS BEEN SUCH A LONG TIME SINCE THERE HAS BEEN ANY UPDATES ;(. Subscribe to: Post Comments (Atom). View my complete profile. Gabe, Ethan, and Dani are enjoying . Natl Marrow Donor Program. Email The Boni Family.
Danica Boni - An Adventure with Hurler's Syndrome: December 2008
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Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Friday, December 12, 2008. Good and Bad News. IgG 319 (Normal 345-1213). For those non MPS families her diagnosis says she will slow down in all regards after the age of three. We are going to fight this as much as we can and hope that she is the best person she can be. And hope that the medical advances that have occurred the last ten to twenty years will help with that. We did do D...
Danica Boni - An Adventure with Hurler's Syndrome: January 2009
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Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Wednesday, January 14, 2009. Dani started Early Childhood Classes. Christmas was good. The kids of course are spoiled and Dani has sooo many Princesses it is amazing. She is so into all the Disney Princesses and Barbie. The boys got their fill of PSP and XBox games. They also just started getting interested in Legos so they got quite a few sets of those also. View my complete profile.
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saving grace: July 2013
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A Family Journal of Hurler Syndrome. Wednesday, July 31, 2013. So far, so good. Gracie has done very well so far. Monday was lab day, and thanks to the numbing cream, the blood draw was a breeze! We also got to see our BMT doc, Dr. Orchard. He was (of course) very impressed with Gracie and pronounced her "awesome! But of course, we knew that. The best part about getting the MRI done like a big shot was that we got to cancel our Tuesday morning Surgery time and slept in! Today is a busy day with lots of a...
saving grace: March 2010
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A Family Journal of Hurler Syndrome. Thursday, March 25, 2010. A (late, late, late) checkup update! Dr Tolar did a short exam, pronounced that Gracie is his Hurler Poster Child, and proceeded to cheer Gracie on as she shared lots of her tricks and even showed him how to edit her chart on the clinic computer. :) Whoops. Anyway, it was a joyful appointment, all smiles and hugs and claps, and Miss Gracie *loved* all of the attention she received. More later, I promise. Labels: Chillin: Life In Minnesota.
saving grace: December 2009
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A Family Journal of Hurler Syndrome. Tuesday, December 15, 2009. Again, a long break in posting and with no reasonable explanation except that Gracie is doing great which leaves us with little to blog about! We've been very busy trying to get moved in to our new beautiful home and prepare for the holidays. So far, we're living here, but we've been so busy that we haven't finished moving yet- and don't even get me started on Christmas. I am so behind! Labels: Home Sweet Home. Subscribe to: Posts (Atom).
saving grace: July 2014
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A Family Journal of Hurler Syndrome. Thursday, July 17, 2014. Entering the 4th hour of our Neuropsychology appointment. And I'm going to try to give you a quick update. Tuesday was a good day for us. We only had 1 appointment- orthopaedics with Dr. Walker at 2pm- so we spent the morning hours at the Minnesota Childrens Museum. This is one of our favorite activities when we visit Minnesota! Needless to say, we all had so much fun that we lost track of time and were almost late for our appointment! At the ...
saving grace: Update from Monday's appointments
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A Family Journal of Hurler Syndrome. Wednesday, July 16, 2014. Update from Mondays appointments. I'm taking a quick minute of waiting room time to update you all on our appointments so far this week. Monday started with Endocrine- where we met with our sweet Dr. Polgreen for the last time. She is moving to LA to continue her research on MPS there. We will really miss her. :( As for the appointment, we were pleasantly surprised to see that Gracie had a little growth spurt! Administration and The Process.
saving grace: Another MRI...
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A Family Journal of Hurler Syndrome. Friday, August 2, 2013. So, remember I asked for extra prayers for good news in Cardiology? Well, thank you for sending them because they worked! We moved on to Audiology and ENT. Gracie made another A by having some hearing improvement when listening to the low tones she was not hearing before. Yay! ENT with Dr. Rimell was short and sweet as usual. Her ears, nose, and throat are fine. Coming up. Thursday and Friday appointments. Subscribe to: Post Comments (Atom).
saving grace: Pictures pictures pictures!!!
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A Family Journal of Hurler Syndrome. Wednesday, July 16, 2014. Enjoying the plane ride to Minnesota. At the Mall of America's Nickelodeon Universe theme park, riding the Choo-choo! Gracie riding Swiper's Sweeper. Hank and Daddy on Blue's Skidoo. Mommy and babies loving the carousel! Daddy and kiddos riding the Balloon ride. Mommy and Hank hanging with Blue while Gracie and Daddy ride rollercoasters! Subscribe to: Post Comments (Atom). A Little Less Scientific If You Please. Administration and The Process.
saving grace: January 2010
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A Family Journal of Hurler Syndrome. Friday, January 8, 2010. A new year. part 1. Stay tuned for part 2- lots more to share! Labels: More Pictures Please. Subscribe to: Posts (Atom). A Little Less Scientific If You Please. Administration and The Process. Back at the RMH. Chillin: Life In Minnesota. In Our Words: Thoughts On the Hurler Experience. Information and Resources on MPS. Is This On the Test? Life on the Unit. Twin Cities Ronald McDonald House. A Letter to Lauren's Donor. How To Donate Cord Blood.
saving grace: August 2013
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A Family Journal of Hurler Syndrome. Monday, August 5, 2013. We said farewell to Minneapolis today. And we chose to bid our goodbye to the Twin Cities today with one last visit to our favorite new discovery of this vacation. Izzy's Homemade Ice Cream in St. Paul. Home of the Izzy Scoop. Yum-MY! Oh man, this place is unreal. They have awesome favors that change on a daily basis, and the best part is that you don't have to choose just one! Each cone or cup comes with a little Izzy scoop of a second flavor!
saving grace: June 2011
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A Family Journal of Hurler Syndrome. Thursday, June 16, 2011. So we have been here in Minneapolis for something like 5 days already, and it has really flown by! We have been busy, busy, busy! Between the full days of appointments and then hanging with our Hurler friends back at the RMH, we have had little time for blogging. I'm going to try and catch up by giving a condensed summary of the appointments we've had so far, and anything that needs further explanation I'll address in a later post. Yes, here I...
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danica bijeljac
C L A P C L A P C L U B 2 0 1 2 Developpement : PIERRE GARNIER. Représentée par l'agence VOZ'IMAGES: Vente de licences photographiques pour l'illustration créative / http:/ vozimage.com. L'île en elle. Listening to elders in their sleep. Mais c'est quoi être communiste? Black mass - grey matter. La femme au petit renard. Une Antigone de Papier. Seule dans ma peau d'âne. Nature morte dans un fossé. Pièce à conviction. Petites histoires de la folie ordinaire. 4 images de l'amour.
danica - Official Website of Danica
DANICA LOVES LIVING ON SOUTH PADRE ISLAND HERE IS A GREAT RESOURCE FOR YOU TO COME VISIT. SPI AT IT'S BEST. South Padre Island Coastal Current. Click here for story. This little lady will have the men tapping their toes and the ladies singing along loud! Great Songwriter, great singer, great music. Danica never ceases to amaze me.". Denny Anderson, Universal Music and Video-. Los Angeles, California. Subscribe to my YouTube Channel . 2013-14 Barefoot and Wired Tour. 2014 Barefoot Acoustic Tour.
danica blanca
Finding clarity and beauty. living with authenticity, compassion, and love. keeping faith. There's so much I'd like to do in this lifetime. If I don't get them all done at least I can say I did what I could, with all I had. In the meantime, I'm watching and appreciating the Star Wars Saga. Why don't you ever respond in a timely manner? They're going to get crushed! What kind of species is Master Yoda? Yes, I just got on this bandwagon! Slow down there horsey! I remember the last time I posted in January.
the adventures of a silly little girl
The adventures of a silly little girl. Sunday, July 18, 2010. She and Him - Thieves. Links to this post. Monday, February 15, 2010. Love knows no boundaries. Links to this post. Sunday, January 24, 2010. New She and Him: "In the Sun". New She and Him: "In the Sun". Links to this post. Wednesday, January 13, 2010. Links to this post. Thursday, January 7, 2010. Something to look forward to. Links to this post. Monday, December 28, 2009. Links to this post. Monday, December 7, 2009. Links to this post.
Danica Boni - An Adventure with Hurler's Syndrome
Danica Boni - An Adventure with Hurler's Syndrome. Join with us in our battle against the disorder affecting our daughter. Monday, August 09, 2010. Gabe is starting 8th grade, Ethan 6th, and Dani is in her last year at Pre-School. Next year we will have every school covered. Wednesday, May 05, 2010. Sorry all for the long time away. The kids are keeping me busy. We now have a teenager in the house. Gabe turned 13 in March. Here we go . That is all I can think of right now. Hope you all are doing well.
Danica Boni - An Adv with Hurler's Syndrome P.2
Dani has a very rare genetic disorder call Hurler's Syndrome or MPS I. Its part of a group of storage disorders called Lysosomal Storage Disorders. You can find out more information at MPSSociety.org You can see the first part of her journey on danicaboni.blogspot.com. This is the beginning of a new journey. Wednesday, August 29, 2012. Orthopedic's Appt 08/29/2012 - The pictures above are a combination of MPS Awareness Day 2012, Dani wearing her glasses, and first day of school. Friday, February 24, 2012.
Danica Borisavljevic - pianist
8230;by two NYC composers – “Gust” by Luke Schwartz and “Brac os” by Albert Gonc alves – will be performed as soon as maternity leave ends about Brac os (“Arms”), by Albert: There is only the single dynamic marking at the front of the piece; the piece [.]. READ MORE ». Collaboration with Nikola Vranjkovic. 8230;on his new single “Ispod oka tvoga” will be released with Nikola’s new book of poetry “Bremeplov” as well as on his new album. READ MORE ». READ MORE ». READ MORE ». READ MORE ».
DANICA BOUTTÉ
The Liberated Wife Series. The Liberated Wife Series. You read so I write. I'm simply trying to co-exist with the stories which live in my head.
D A N I C A B O X . C O M
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D@nica'$ Party
1 of 1428 pages. Shared 1 year ago. Sorry for the lack of posts! We are having a great time, but have hardly had time to stop! So here is a little photoset from this morning 3. Shared 1 year ago. Shared 1 year ago. Shared 1 year ago. It’s not exactly love at first sight. It is more like soul recognition. (via kushandwizdom. Shared 1 year ago. Everything is one. Love is all there is. Shared 1 year ago. Shared 1 year ago. Shared 1 year ago. Shared 1 year ago. Shared 1 year ago. Shared 1 year ago.
