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Help Raegan Journey To Well

$35,302 of $60,000 goal

Raised by 204 people in 12 months
This page is to raise money to help support Raegan in her fight to stay well.

Raegan has spent well over 175 days over 19 stays in the hospital - much of that in isolation- since spring of 2017.

Raegans care plan is mostly private pay and costs in the thousands per month. As a two-income household down to one- we ask for your help in continuing to support Raegan in every way possible on her journey to well.

Every child is unique- here is her story. 

Raegan is a lovable, smart 5-year old who lives in San Diego. Right now, we as a family are struggling to provide the level of care she needs to get her and keep her well. And Raegan has been acutely sick for months- gravely so at times. In July she was intubated and suffered from a rare bacterial infection that almost killed her. That was followed by a blood infection and the list goes on and on and on.

Our job as parents is to lift her up and help her continue to fight this rare combination of sickness and underlying chronic conditions that keeps us in a perpetual loop in and out of the hospital. 

 There is so much to say about Raegan. Like how she has a best friend Mr. Monkey who talks and is always by her hospital bedside. That she is atypical for her underlying genetic condition and has no interventions of any kind. That she is incredibly smart and uses modified sign language among other things to communicate just like any other child. That she is a true warrior princess- who has fought for every single basic function most of us take for granted- and then more acute battles which bring us to asking for your help.

 This five-year old has seen and conquered so much, too much for any one person to go through in a lifetime. But she continues to get better and its a lot of work to get her there. 

 Humbly, we ask for your help in continuing to provide the best level of care and treatment for Raegan possible. We won't stop fighting for her as she she continues to fight. She stomps her feet to get up every day to keep on dancing -even when acute illness again and again knocks her down - she keeps getting back up. And so are we. Any and all donations will go  strictly to Raegan's care plan designed to keep her well and support her when she starts to get sick. Most of what we do is not covered under her primary or secondary insurance. The following are some examples:

1) metabolic and diet program designed to optimize her ability to fight infection and stay healthy

2) alternative medicine and treatments that effectively treat her underlying chronic conditions and support building her immune system

3) extra private care support

4) travel and expenses for clinical trials and research and discovery treatments available.
 

****your thoughts and prayers are more than enough during this time if a financial contribution is not deemed warranted or possible****
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This will be our final posting as we close out this chapter and update you one last time on our dear little girl.

Yesterday we finally returned from Mayo Clinic. Raegan bounced back from intubation like a true warrior and went back to walking and eating ( on her own even!) and much more.

She finally got her fecal matter transplant and her gut is healed from C Diff and the horrible intense pain that plagued her for months. While her epilepsy worsens Mayo guided us and we finally were able to go into full ketosis since her gut was better and that- instead of medications- will be the primary way we manage her seizures moving forward.

It has been quite the journey. 6 months - two intubations, back to back infections - but Raegan is home and stable and ready to thrive. We threw everything we had at this because we believe in her and we’ve always let Raegan be the one that defines her fate. Not a genetic condition or bad luck or any medical anomaly. We search and test and try and see what works and trust the guidance of doctors but most importantly our gut intuition.

As we close this chapter we know things won’t always be perfect and we are ok with that. But having a life worth living Is worth all the sacrifice and energy and time we can invest and that will always remain a top priority in supporting Raegan as she blossoms into the amazing smart young toddler we know and love.

Thank you for the bottom of our hearts. Raegans journey to well was not possible without each of you. We are forever grateful and humbled by the pouring of support shown here.

With love-
Raegan, Janelle & Ryan
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Raegan woke up a bit ago to a pretty pretty princess castle decorated room at St. Mary’s/Mayo in Rochester, MN.

She woke and was visited by a music therpist who serenaded her to Disney favs as she smiled a few times and signed to her chest and stomach and mouth making sure we all knew how she is feeling. Still two infections being treated and fever and some seizures but overall looking good coming out of almost two weeks intubated...
Ha
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Raegan is still intubated and in an induced coma. We are working towards getting her awake but could be a while still. Multiple infections present.

If anyone would like to send cards our fighting warrior princess would love to wake up to them!

Especially homemade get well cards from other kids. So if you feel like having a craft time session for Raegan pls send notes to our new address ROOM 207 at Ronald McDonald House address on image here.

Thank you from the bottom of our hearts!
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It’s with deep sadness but strong resolve we write this update.

Once again Raegan is battling sickness and uncontrollable seizures like we’ve never seen before. She was intubated at St. Marys/Mayo in Rochester, MN earlier today.

We knew she wasn’t stable coming here. That’s why we came. We knew it was a matter time before reinfection of any kind could take place. But that’s why we came because we can potentially get to root cause and stabilize her permanently with the breakthrough treatments only available here.

Lots going on, lots we don’t know. We won’t post many updates as our focus remains steadfast on supporting her in every possible way and working hand and hand with our great team of ICU doctors and nurses.

No idea how long we will be here- that’s up to Raegan now. And we will be there every step of the way.

We have the upmost faith in the staff here, in her ability to beat whatever is triggering this and to stay steadfast in our reallve to keep hoping for better days. Keep our warrior princess in your thoughts. She’s where she’s meant to be.
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Raised by 204 people in 12 months
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