The Hagen Family’s Lyme Story and Fundraiser

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Guest Author: Julie Hagen

Hello everyone. We as a family, are in the unfortunate place of needing financial help from the kindness of others. Our medical journey started 9 years ago. Julie and Sid welcomed their first daughter Lexie into the world, a few months later Julie’s health started to decline. It started with joint pain and progressed from there onto other symptoms. It became difficult to lift Lexie out of her crib, twist and untwist baby bottles, and simple tasks became increasingly difficult. She began her search for medical professionals that could help find what was causing all of this and hopefully come up with a solution. After 3 years of doctors not having answers and sending Julie to specialist after specialist and having every test known to man, Julie lost hope and stopped searching. Thankfully just as Julie lost hope, a new found friend going through the exact same thing came into Julie’s life. That began Julie’s healing process of finding a specialist that determined Julie had Lyme Disease, Babesia, Bartonella and POTS in 2010. Since then she has also been diagnosed with Mast Cell Activation Syndrome, and RA mixed in there.

It has been a journey of fighting like hell to regain her health, having to close down her child care which in turn caused them to lose their house and move in with family. After hitting remission for 2 years, the Hagens were able to slowly work back up and start over again. They were able to finally move out of the extended families house and rent a town house. They also welcomed their second daughter, Emmie and Julie was able to work again. Things were going pretty good for them! Fast forward and Julie’s health has declined again and she is back to fighting to reach remission once again.

More recently 9yr old Lexie has been having her own health struggles. She was born with a metabolic disorder called MCADD (thank you Newborn Screening for saving her life) and also has Celiac Disease. This past month Lexie became very sick. She woke up one day sick and it just never really went away. She was throwing up, had high fevers, body rashes, weakness, fatigue, stiff neck, body pain, droopy right eye, sore/painful/swollen knee caps, dizzy. She spent 4 days in the hospital, came back for 1 day and then was back to the hospital for 4 more days, back home a couple days and back again to the hospital via ambulance. The last time she was brought to the ER she had a fever of 105.7 and was miserable. At this point she had already gone through 8 Iv’s because they kept infiltrating, over 17 pokes to try and get IV’s and labs, a picc line, brain MRI, and was really feeling traumatized. While in the hospital she had seen loads of specialists, had teams of medical professionals coming in, running tests, having her do exams with each professional, skin biopsy. No one had answers. She was medicated to control the fevers and finally put on antibiotics after I had been begging for it. I brought her to another specialist for a second opinion and it was determined she has Acute Lyme Disease with possible co-infections. She has since started treatment for the Lyme Disease and will reassess to see if treatment for co-infections needs to be added in. We are hoping we caught it in time and it truly is acute and she wont need treatment past a couple of months. Only time will tell. She is my hero, she has been through so much in her 9 years of life and she still has that spirit and joy that would be so easily broken.

Due to her long hospital stay I have lost my job and we are in need of help. It is both a blessing and a curse that I am not currently working. A blessing because my own health is not well, I really need to focus on healing and getting back to remission but we badly need the income for our medically complicated household. As some of you know, Lyme Disease treatments are incredibly expensive, I am slowly making some improvement but I have a long road ahead to get where I need to be. I have had a picc line in for about 4 months now for daily IV treatments and I am also taking a lot of oral supplements and medications to support my body and help it fight. Just this week I added in 2 more IV fluid bags a day, so I am currently on 4 IV’s a day. I dont want to stop treatment because I will just backslide, I haven’t made enough progress to get past that bump in the road. But my children come first, and if I have to stop treatment to help them with their medical needs, I will.

We are looking for help in any way possible, its really hard asking for help when you feel like you should be able to fully provide for your own family. We would like to continue all medical treatments for both Julie and Lexie and be able to still go to all of our appointments too, we have to travel out of town for some of them. Emmie, our 2yr old, also has a lot of appointments due to her food allergies. Thank you so very much, we really appreciate it and are blessed to have people in our life that are willing to help us in our time of need.

*Click here to make a donation: https://www.gofundme.com/2f2nazu4

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