AJ 's Bone Marrow Transplant Fund

$6,575 of $5,000 goal

Raised by 81 people in 39 months
Alexander, our little AJ, was born October 12th, 2014 two months early with his twin sister, Emma. His placenta abrupted and his vital signs dropped needing an emergency c-section.

He did very well the first 10 days in the Ridgeview NICU sharing a room with his sister. One day when we came to spend the day with him he was acting very fussy and unhappy and all who know him know this is very different. They tested his blood in three different machines because it was so off no one could believe them. He ended up being taken in an amulance to children's NICU where we were told multiple times he shouldn't even be alive. After a few weeks of resting his intestines and not allowing him to eat we were able to start slowly feeding him an enzyme based formula. He started slowly gaining weight and the Dr's started thinking he may have a cow milk allergy. After 5 weeks at Children's he was discharged home and made it two weeks before he started dropping weight and becoming acidosic again. We were then sent back to Children's NICU for another 4 months.  After many tests, picc lines, biopsies, 2 broviacs and a genetics test revealed he has IPEX. A rare chromosomal autoimmune disorder. His body is fighting his intestines and he is not able to absorb his formula to gain nutrients or weight with out lowering his immune system.  His skin is also very sensitive and we are not allowed to start any type of foods until after the transplant.  Other autoimmune disorders can start so we are trying to get the right timing down.  AJ was able to come home March 18th and is taking an anti-rejection medicine to lower his immune system so he is able to absorb his formula. We have to continue to go to Children's to see his immunologist every 3 weeks for labs and a good look over and the weeks in between we have a nurse come out to check on his weight and skin.  

We opted to have a bone marrow transplant which is the only cure. They found 8 matches right away. The Dr's want him to gain weight and be stronger so the goal is to transplant mid September and he needs chemo 10 days leading up to it. To transplant we want him older and stronger, but also do it before he develops diabetes, thyroid disorder and other autoimmune disorders.  One of us is not allowed to work and needs to stay down in his hospital room the entire time. Once we are able to discharge then we need to go down daily, every other day, etc.  Until they are confident he is healthy!

We want to give thanks for all the constant prayers and support we have for AJ and the rest of our family! We will also be having a benefit for AJ at the Mound Legion July 25th from 4-midnight. Feel free to contact us if you have any questions or ideas!  Thank you! He is such a smiley happy boy for all he has been through and I can't wait to see him grow up and have a happy life!
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Thank you all for praying for our little AJ! He is doing well at home! We go back for labs 2-3 times a week down at the U of M Masonic Childrens Hospital. Depending on his labs-that lets us know how long we will be there and if he needs any infusions. We are in the positive day 70's (i've lost track). AJ is starting to get his hair back! He likes to scoot instead of crawl and keeps up with twin sister Emma easily! He can pull himself up and slowly walk around hanging on! He likes to yell, "Ma" anytime I am out of sight! He is not a big fan of baby food, but does like yogurt and eating off mom and dad's plate! Big brother is his idle and he follows him around as much as possible!

We did get readmitted about 3 weeks after we left the first time with a Staph infection in his blood and hickman...so he has had a few surgies with new picc lines and a new hickman. Emma also decided to get chicken pox from her vaccine, a minor hiccup thank goodness, AJ did not get them! Other than that we are just enjoying the holiday season all together! We love you all!
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After talking to AJ's immunologist and bone marrow transplant dr they would like to go with the donor that needs to go earlier. So the tentative goal is to have them go in next week for their physical-as long as they pass then AJ will tentatively start his work ups at the U of M August 10th and then tentatively be admitted and start chemo August 26th. Will keep you updated! Hope to see you all at the benefit this Saturday!
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Thank you to all our donors so far! Very excited for the benefit coming up! I just got a call from the University of Minnesota and our donor we wanted to go with is only available a few weeks later then they wanted so the Dr's started looking at the next donor also, who is also willing, but can only do it earlier. So we are waiting for our Dr's to make the best decision on donor and timing. If we go with the donor that needs to go earlier AJ will have to start work ups at the hospital mid next week and transplant mid August. We will keep you posted on the decision.
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I just got off the phone with AJ's immunologist and we have a little set back. She didn't like some of his labs that came in today. His liver enzymes came back high and we were hoping it was caused from a higher dosing of his medication. This is not the case. They got us in to the hospital in the morning for more labs. They are worried he could be developing an autoimmunity to his liver. His IGG also continues to drop so we are going to give him an IV infusion of antibodies tomorrow. They said we would usually have to do this every month until transplant. So now we are going to cancel our Wedding/1 year anniversary celebration for next year so we can go to transplant earlier and then next year we can have even more reason to celebrate!
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$6,575 of $5,000 goal

Raised by 81 people in 39 months
Created June 23, 2015
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$25
Anonymous
34 months ago
$200
Anonymous
37 months ago
$25
Anonymous
37 months ago
NB
$30
Nancy Bloms
37 months ago

Your family will be in my prayers.

$50
Anonymous
37 months ago
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