Support for Medical Expenses

$1,805 of $38,500 goal

Raised by 45 people in 31 months
This fundraiser is for the ongoing medical and related expenses for two medically complex siblings. From travel to out of the area specialists, transportation, hotel, cooling units for the house, doctors that require cash up front, parking fees, safe foods during hospital stays, and more. 

Since April of 2014, we have been dealing with Jack (10) and his unique health issues that have stumped his care providers. He sees multiple specialties, has had two hospitalizations, and has been to some 70 appointments in just over a year in an attempt to control his symptoms and receive a diagnosis that explains his health struggles. He has gone from an extraordinarily active kid, to one dealing with almost constant pain. He needs more tests, more labs, retesting some biopsies, and some new specialists. He has a new team, none of whom are close to home. We need help getting him to his appointments! 

In January 2015, Davy-Rose (11) started having recurring anaphylaxis (severe allergic reactions). We watched her quickly deteriorate from being an active child, and a runner, to having multiple allergic reactions daily and unable to tolerate most foods. In the end of May she was taken to a specialist two+ hours from home who is well versed in the disorder she was suspected to have. Admitted that day, she was inpatient a month. She received a diagnosis of systemic mast cell disease, and was subsequently put on the appropriate medications. This is not an easy disease, and currently Davy-Rose is housebound, has 7 safe foods, and is TPN dependent. For a quick explanation on what mast cell disease is, please view this short segment from CNN. http://www.cnn.com/videos/health/2015/04/29/orig-allergic-to-life-brynn-duncan-mast-cell-activation-syndrome.cnn
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2016 is coming to a close. I wish I had some sort of update that wow, we are doing so much better! Truth is, we are struggling.

Recently we traveled to UCSF to meet with two specialists for Jackson. Time will tell if that was worth it or not. Davy-Rose is not doing as well as we would like. Honestly, we're just pushing along, following doctors orders, following up on referrals we have been given. We've had to travel a lot for appointments the past few months (on average of once a week), and it's taking it's toll. Financially, physically, emotionally.

What choice do we have, though, we just have to keep going, right?
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Here we are, it's January 2016 already! We have a few updates.

It has been discovered that Jackson has disseminated histoplasmosis. This is a fungal infection that's normally just in the lungs, mild and short lived for most people. His is spread throughout his body, wreaking havoc. His lung function is continuing to decrease. The histoplasmosis does *not* explain everything, unfortunately.

We are assembling a new team for him that can handle and understand the mito disease and disseminated histoplasmosis, and also try to help with the other pieces we don't have a handle on yet. We also discussed concurrent care with two of his doctors. They were both felt that Jackson receiving hospice services as well as curative treatment is our best option. We are working on the insurance piece for getting the proper services in place.

Davy is still on the same TPN and formula mix. We have trialed a couple of different foods and she has reacted to those, so essentially she's just on the potato chips. She's largely housebound, and is unable to really go out and about, or we end up with reactions.

Our most immediate need? Getting caught up on the rent we fell behind on while the kids were in the hospital. Catching up, while paying late fees, *and making sure we are making sure to get to appointments both near and far, as well as things not covered by insurance is damn near impossible.

Also: if you would like your donation to go to a specific item, please notate. For example, kids' therapy, gas money, hotel, rent, pharmacy, something fun, and so on. Make a notation and I will make sure it makes it to the right envelope!

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Hi friends! After a three month stay for the girl, and a month for the boy, we are HOME as of Friday night! Hopefully to stay. We are all weary of being in the hospital.

Jackson had a lung biopsy, that looks like it may be leading us to a helpful piece to explain his decrease in lung function. We are hoping for test results in the next two to three weeks that will point us in the right direction for a treatment plan. His lung function is under 50%, and he is not having an easy time with day to day activity. Hopefully we will have some test results coming back in the next few weeks that will help us put some pieces in place for a treatment plan. He also has a lot of moving pieces, and these upcoming test results only provide one part of the puzzle. Any movement forward though, right?

Davy-Rose is currently on 24 hour TPN (IV nutrition), and 24 hour custom compounded formula via g tube. Her fats are coming from the only food she is currently tolerating long term, Jackson's Honest coconut oil chips. The company generously sent a case of chips our way, which are off limits to everyone but Davy-Rose. We hope to keep building on the chips, and keep moving towards more food trials, and eventually be able to leave the TPN behind.

After three months inpatient, we are really struggling with a lot of pieces to keep life afloat. We have a huge need to secure appropriate transportation, and to catch up on rent (living in a cardboard box does not sound like a fun thing to do right now). Davy's formula is an excluded benefit, and is extremely expensive. We have been perpetually living in crisis for months, and we have decimated any bit of financial stability we had. They say it takes a village, and for those of us that deal with long term health crises as such, that's even more true. Every little bit helps, and there's no way we can do this alone. Even sharing our story helps, the diseases we deal with are very rare, not well known, and hard to find care for.

Thank you for supporting us, for following our story, for sharing our story. Rare Disease Land can be a very lonely place, and it is also hard to keep positive thinking in the forefront. Your sweet notes and support keep us going!
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$1,805 of $38,500 goal

Raised by 45 people in 31 months
Created July 26, 2015
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Rose Bekker
9 months ago

sending you lots of love and a little money <3

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