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Maggie’s Story

Hi, my name is Maggie. My mommy started this site to keep everyone updated about my journey with a rare bone marrow failure disorder called Diamond Blackfan Anemia.

Thank you for taking the time to read about me!

 

 

Maggie's story started at 8:49 am on Tuesday August 19th, 2008. After a long 9 months full of ups and downs (including a cystic hygroma, a CVS test, and tons of ultrasounds and fetal echocardiograms) we welcomed our little girl into our lives and fell completely in love. She seemed perfectly healthy at birth, weighing in at 6 lbs, 5 oz and pink as could be. She was given a clean bill of health and 3 days later we came home to settle into a routine with Maggie and her 2 big brothers.

4 weeks later Maggie came down with a cold, I decided to call our pediatrician when almost a week had gone by and she still wasnt better. I figured I was being overly paranoid, but better safe than sorry. We got to the dr.'s and realized she had hardly gained any weight, she had a heart murmor and her dr. thought she looked pretty pale. He decided to send us for bloodwork that night to be sure everything was okay and 2 hours later I got a phone call that changed everything. Her dr. told us that Maggie's labs were pretty alarming and we needed to get her to the ER, we knew it was bad when he told us we needed to call 911 as she needed to go via ambulance. When we got to the hospital we found out she had a hemoglobin level of 3 (a normal hemoglobin starts around 11, a 3 is an extremely critical blood count). She was admitted to the PICU and a couple hours later received her first blood transfusion. She ended up getting 3 transfusions during her first stay in the hospital and now receives a blood transfusion about every 2-3 weeks.

Maggie was officially diagnosed with Diamond Blackfan Anemia after a bone marrow biopsy showed no red cells being made in her marrow. She also has tested positive for the RPS 19 gene mutation that is the most common gene mutation found thus far in DBA patients.

Diamond Blackfan Anemia is a rare life threatening disorder, affecting only about 750 people in the world. People with Diamond Blackfan can not make enough red blood cells needed to survive. It is usually diagnosed in infancy and has no cure.

Updated 2/10- Maggie recently had trial of steroids..steroids can cause some people with DBA to start making red blood cells. Unfortunately the steroids did not increase her red cells and she was taken off after a 4 week trial. We have started Maggie on desferal to reduce the high amounts of iron in her body caused by all the transfusions. 5 days a week for 10 hours a day Maggie is hooked up to a pump that administers the medicine through her central line. We are looking at doing a bone marrow transplant when she is around the age of 3 with her brother Lucas as her donor.

Latest Journal Update

Long time no see!

Hi everyone! I am soooo sorry it has been such a very long time since I have updated Maggie's page!! Life has been so busy and every time I have tried to sit to write an update I get called away from the computer for one reason or another. I do keep Maggie's facebook page updated frequently with pictures and appointment info, if you search Team Maggie on facebook you will find it and if you are interested in following along on her journey there I am much better about keeping that up to date.

Maggie is doing excellent! Since my last update we have been to Disney for a much needed family vacation, we have celebrated her one year transplant anniversary (in July), she has played hockey, played soccer, been to birthday parties, started first grade..basically she is just enjoying life! Her hair is getting long and it is SO curly..she has little ringlets in the back and it's just so cute.

Health wise she has had a couple admissions since my last update but nothing too major. She was exposed to chicken pox back in August and was admitted just after her 6th birthday and missed her birthday party. I felt so sad for her but thankfully she never came down with chickenpox and after 5 days of anti viral medication was able to go home. She did miss the first day of school due to the admission but was right back at it the next day. We are still dealing with a couple minor things..she still has blood in her urine which seems to be worse if she is ill. And she is having a hard time gaining weight. We saw a nutritionist a couple weeks ago and when we go back to Boston the week after next she will see the kidney doctors again to hopefully address the blood in the urine issue.

Otherwise, she is doing great. Her counts are all stable, in fact she had her highest hemoglobin yet last time we were in clinic, I think it was 12.5. She is still getting IVIG every month but we are hoping to stop that soon, we are waiting for more immune function results and if those are good she can stop the IVIG and get her port out soon. she has been on IVIG longer than expected but she doesn't mind going to clinic and seeing her nurses there..she's such a trooper!!

Again, I am so sorry this update is so late..Life is pretty good for our family right now and we are just living it up! I will try to be better about updating before months and months go by again. :) Thanks for checking in on my baby!
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Comments

9 Comments

Jeanne Leder
By Jeanne Leder
Thanks SO much for this update. I care a lot about sweet Maggie! I knew there was another way to check on her, but wasn't sure what it was. We will be praying about the kidney issue.

Thanks too for the cute picture! It's hard to believe she's grown so much.

God's blessings!
With love and prayers,
Jeanne <><
Sandy Daron
By Sandy Daron
PTL your little sweetie bug is doing soo well!! Maggie, YOU ROCK GIRL!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
Lori Lundy
By Lori Lundy
so happy to read an update about Maggie.so great to read how well she is doing.
Barbara Sassi
By Barbara Sassi, MO
Praise God that the Rudnicki family has some normalcy again!! Always look forward to your updates, but understandable why they are less frequent. You all are still in my prayers, and Maggie, you are my hero!!!
marilyn bergagnini
By marilyn bergagnini
SO HAPPY TO SEE A PICTURE OF BEAUTIFUL MAGGIE AND HEARING THAT SHE IS DOIN GOOD....GOD BLESS YOU PRECIOUS MAGGIE AND HUGS....
Amy Raezer
By Amy Raezer
So happy things are going so well for Maggie!! She deserves everything good from here on in,and for years to come!! Praying that the blood in her urine issue is nothing,and that she indeed can get off the IVIG!! Continuing to pray daily for Maggie and all of you,and so are my parents ,friends,and followers!! Hoping all the days to come are nothing but the best!!

Love and Prayers,
Amy

CB : amyraezer
Ruth Warner
By Ruth Warner
It seems no news is good news. She has good things happening in her life -- and yours!
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Janis Brooks
By Janis Brooks
So happy to read all the news. As the old saying goes, " No new is good news." This is certainly true. Sending our love & prayers to all of you. Rocky & Janis Brooks
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Anne Woodard
By Anne Woodard
Thanks for all the updates & for the adorable photo! So glad to hear all the good news!!!! Thanks, too, for the heads up on the Facebook page...I will have to check it out! Keep up the great work, Maggie!!! <3
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1 person hearted this