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My 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.

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Lauren Rudnicki posted a new journal entry.

Hi everyone! Maggie had a pretty busy and exciting day on Wednesday! We started off with clinic in Boston. A week and a half ago or so Maggie had a fever and was at the ... Read more

Amanda Peck signed Maggie's Guestbook.

Praying for Maggie, that the cream will help the rash go away soon! Happy to hear that she had a great time at the Cuts for a Cause event!  Praying daily for healing for ... Read more

Jeanne Leder signed Maggie's Guestbook.

I love the video!  And the picture!  Maggie, that's sooo neat that Shawn wanted you to shave his head!  God job!!We are praying that the rash turns out to be not GVHD  ... Read more

Sandy Daron signed Maggie's Guestbook.

HOW AWESOME!!!! I have LOVED seeing all the pictures on FB. I am glad Maggie is doing soo well!!Love ya!! C.O.L.E.'s Foundation (Caring Openly, Loving ... Read more

Wanda Mason signed Maggie's Guestbook.

Maggie, you lucky girl, getting picked to shave Shawn's head.  I know you are one of his favorite little girls.  Praying that this rash does indeed clear up with the ... Read more

Mary Beard signed Maggie's Guestbook.

Forgot to say that is wonderful that she got to participate in shaving heads and raising money. Read more

Lisa Butler signed Maggie's Guestbook.

Praying for no GVHD!!! Lifting you up in prayer.COLE's Prayer TeamWww.colesfoundation.org Read more

Betty Lightner signed Maggie's Guestbook.

Seeing these photos was the best way to start my day. Praying no GVHD and that you guys can feel peaceful in the meantime. The wait for results is always so hard. Keep ... Read more

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