Bring Deklan Home (Deklan Galvanek)

Bring Deklan Home

For: Deklan Galvanek
Organizer: Kristen Lenhart
Bring Deklan Home (Deklan Galvanek)
$26,692
of $50,000 goal
53% Complete
Updated 11/6/14:

Seventeen-month-old Deklan Galvanek's survival depends upon the national bone marrow registry following an unsuccessful bone marrow transplant from his mother Jenna earlier this year. The outcome guarantees Deklan's dad Evan will not be a match either.

"It was just kind of weird that a complete stranger could be better suited to save Deklan than me or Evan," said Jenna from the front yard of the family's Cary home.

In February, doctors at Duke diagnosed Deklan with the rare and potentially fatal Severe Combined Immunodeficiency known as "Bubble Boy" disease. His parents have turned their home into a sterile bubble, stringently regulating cleanliness and who comes and goes.

"The garage is kind of the staging area, everybody takes their shoes off," Jenna explained. "We wipe down boxes and bags and anything that's going to be coming into the house we try our best to clean."

The house is also outfitted with soaps, wipes and hand-sanitizer dispensers throughout and an air-purifying system. They are the ultimate safety measures to keep the toddler healthy and infection-free ever since he was first diagnosed with lacking an immune system earlier this year.

The lifestyle has taken its toll on the family.

"I thought we'd be going to the zoo and the aquarium," explained Jenna, "but I'm in the house all day with Deklan."
What's especially hard is not being able to participate in playdates or take the little boy outdoors to play.

"He would look out the window, and we would say, 'That's outside, outside,' everyday so naturally now his first word, 'outside, outside.' That's heart crushing," said Evan.

Between the set back of failed a marrow match and $2 million in medical bills, the Galvaneks have gotten by with an outpouring of support from friends, Deklan's innocent joy, and now prayers during a desperate wait for the perfect match to surface from the bone marrow registry.

"That's the situation we're in right now. We're counting on this for his survival," said Evan.

The family is awaiting word about the status of multiple potential matches.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Deklan is only 8 months old and fighting multiple viruses that are affecting his heart and breathing.

Now it was found that he is suffering from Severe Combined Immunodeficiency, which requires a bone marrow transplant. http://www.scid.net


They have a 12,500 deductible with their insurance 
and I'm
 hoping to raise money so this won't be an added stress to these two wonderful parents.

There is no telling how much the bills are going to be now with the bone marrow transplant, chemotherapy and continued care he will need , even if we reach our goal please still consider donating!!

For updates from the parents please visit this page: https://www.facebook.com/pages/Bring-Deklan-Home/714763788555652


Help make a difference - http://www.thepetitionsite.com/takeaction/465/754/944/?taf_id=10737127&cid=fb_na

Articles on Deklan:

http://longvalley.patch.com/groups/giving/p/babys-battle-with-rare-immune-disorder-spurs-outpouring-of-support


http://www.wncn.com/story/24817172/sick-cary-child-with-tests-positive-for-scid#.UwzRhZJMpUE.facebook

http://abclocal.go.com/wtvd/story?section=news/local&id=9439881

http://www.wncn.com/story/24770747/h1n1-makes-a-deadly-comeback-in-north-carolina#.UwWIJyjH0Oo.facebook


Updates

02/22/2014
by Kristen Lenhart
What a roller coaster ride this has been. Right now, Deklan is doing great. Stable. Slowly working his way off of the ventilator and starting to breathe on his own. But it appears that our little journey may be far from over, and may even include transferring to yet another hospital. Doctors seem to think that his lymphocyte levels are indicating that he has something called Severe Combined Immunodeficiency (SCID). This means that his little body is not equipped with the cells it needs to fight off all of these nasty infections. We should have a better idea and a more clear plan on Monday once they do a test to check levels of CD45RA to see if his t-cells have gotten the "education" necessary for proper immune response. How is SCID treated? Most likely it would include monthly injections of IGG (antibodies) as well as a bone marrow transplant from Evan or I (depending on who is a better match). But, for now we just focus on our sweet Deklan's recovery and wait for Monday to see what the test results are. Sigh. Praying for our little man, along with all the other children, babies and families stuck in limbo with us here in the ICU. 


02/21/2014
by Kristen Lenhart
For updates from the parents please visit this page: https://www.facebook.com/pages/Bring-Deklan-Home/714763788555652

02/15/2014
by Kristen Lenhart
Here is his new setup here at the hospital. Last night was uneventful thankfully but that is because he is heavily sedated and on a paralytic along with many other medications after his episode of SVT. They have to be very diligent at keeping his electrolytes up because once they decrease he starts to throw PVCs and PACs (irregular beats). He will be on the anti-arrhythmia medication long term even after we take him home. Evan slept in the recliner, and I slept on the floor. Both of us have back aches today haha. But at least we didn't have to be away from him. Today should be uneventful as they are just keeping him stable and are not weaning him off of anything. We are going to be here awhile. His vent settings are high so we have a long road ahead....


02/14/2014
by Kristen Lenhart
PICU, Day 5, Valentine's Day. I was hoping it was just a bad dream when I got awoken in the middle of the night to beeping and blinking red lights. Sweet Deklan's oxygen and blood pressure were dropping and they had to increase his levels on the vent. He is stable now, but we are being transported now to UNC hospital because they have a bypass machine there JUST IN CASE. He is no where near that yet it is just a precaution. They are saying it could be that he has an infection attacking his heart. We won't know until they do another EKG. My heart is absolutely breaking and I'm still not really sure how we got here but I am so glad to have Evan by my side through this tough situation. It's times like this when a relationship is really tried and ours is rock solid. Please feel free to share our story. Prayers are much appreciated.


02/13/2014
by Kristen Lenhart
It has been a relatively quiet day here in the ICU with the exception of a few dips in oxygen/blood pressure. But his situation is a bit complicated because he has a lot going on. Suspected viral pneumonia which caused his heart to go into SVT (arrhythmia) which in turn lead to pulmonary edema (fluid in the lungs). All of the meds are helping in most ways but are causing some issues in other aspects because of their side effects. He still has a way to go but our sweet Deklan is STRONG. It will just take time. They weren't able to wean him off the vent too much today, but hopefully tomorrow we will be able to work towards getting him off of it once he has some rest...

02/13/2014
by Kristen Lenhart
Update from Jenna and Evan:

Not too much to update which is good I suppose since he has not gotten worse. Stats are stable, however there were issues with his oxygen levels while trying to wean him off the vent. It looks like he will have the breathing tube for several days at this point. His central line, which is currently in his neck, will need to be moved to his groin because it is not working correctly. His urine output was low so they had to put a catheter in. He is resting peacefully now which will hopefully give his little heart and lungs a break. Will update tomorrow. Keep praying! ?#‎bringdeklanhome?

02/12/2014
by Kristen Lenhart
Deklan now has a breathing tube to give his little body a rest, please pray for a speedy recovery and the Doctors figure out what is going on. Remember to share and that any little bit helps!

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