We’ve partnered with LPFCH at Stanford for SIOD research & you can virtually join to support no matter where you are and run/walk for Emily & SIOD. ⠀
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Register here today!π⠀
https://my.supportlpch.org/team/226195
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ππ»Make sure to sign up as “VIRTUAL RACER” if you’re not local to Stanford. Stay tuned for event on our page for those running in Nebraska /Iowa and more! ⠀
(Ex: fee $40 to run, so just donate that in the virtual racer category)⠀
ππΌNote from Stanford: “Our virtual runners make a donation to SIOD research. Our friends and family will automatically receive a fundraising page upon registering to share with their supporters. As a note, we do send an email to all participants who select “other” as the fund they would like to fundraise for to confirm in writing where they would like their funds raised to go towards.”
Tuesday, May 14, 2019
Thursday, April 18, 2019
Emily Update
There is kind of a lot of a little that is going on with Emily right now. Her left ankle is better, however she is having increased days and amounts of headaches (perhaps migraines even) which can be prevalent in #SIOD. Increased spilling of protein from her kidney. At the same time her daddy Joe had his kidney stone surgically removed earlier this year, Emily has increased crystals from his transplanted kidney (citrate and calcium). So she is on one additional med for the protein spill and we will try increasing even more water and lowering sodium intake for the crystals. Now she is having troubles with her left arm. Emily has missed quite a bit of school and her therapies these past two months to her already modified schedule because of these pains and it is affecting her quality of life, which her dad and I strive to keep at the best level we can! Through it all her doggy, Pumpkin is by her side and helps to make it all a little bit better.
Sunday, March 31, 2019
Tuesday, February 26, 2019
As A Community We Can...
All children with SIOD have extremely low immune systems.
During "flu" season we have to be extra cautious with everyone really. Extra hand washings, masks for doc apts even if we aren't the ones sick, and changing clothes when we get home from school, outings or events.π·
We're used to and have gotten pretty darn ingenious about practicing really good hygiene, especially these winter months, because we know how detrimental even a common cold could turn for Emily.
One of our greatest concerns is one of the NUMBER ONE causes of DEATH in an #SIOD child...infection. #believeinemily #littlegiants #raregenticdisease #infection
As a community we can all do our best to establish healthier hand washing routines, staying home when sick and with fever and staying respectfully away from those we know are also susceptible to infections.
Together We Can Do Something Extraordinary!
Sunday, February 10, 2019
Wear RED for Emily & SIOD
One more day til we #wearRed to raise awareness and educate others about the Little Giants Foundation and #SIOD! ❤ (2-11-19) Take your pics,π· postπ± and use the hashtags #SIODawareness #believeinemily! AND wear RED❤ tomorrow to honor Emily and her Governor proclaimed Nebraska Little Giants Day!!π #littlegiants #believe
Friday, February 1, 2019
Because of you...
SIOD research funding:
Past SIOD tissues from the Canadian lab were transferred to Stanford in 2017 where they are exclusively working on #SIOD research.
Because of YOU this is possible!
YOUR support is making this testing possible.
During our affiliate Midlands Community Foundation Matching Charitable Program over the holidays you all contributed $3,782.00!!!
Now to keep Stanford funded and working! #believeinemily #littlegiants #researchfunding #midlandscommunityfoundation #Nebraska #raisingawarenessforSIOD #raregeneticdisease
Past SIOD tissues from the Canadian lab were transferred to Stanford in 2017 where they are exclusively working on #SIOD research.
Because of YOU this is possible!
YOUR support is making this testing possible.
During our affiliate Midlands Community Foundation Matching Charitable Program over the holidays you all contributed $3,782.00!!!
Now to keep Stanford funded and working! #believeinemily #littlegiants #researchfunding #midlandscommunityfoundation #Nebraska #raisingawarenessforSIOD #raregeneticdisease
Sunday, January 20, 2019
Kidney News & #SIOD
Eight months with no surgeries...until the New Year. This time it's the Jeek Masters. So those new to our journey, or for those who forgot, Big Daddy Joe Mo donated his kidney to Emily 10.5 years ago. He had not one, but 4 incisional hernia repair surgeries over those next 3 years post transplant and would do it all again. Emily has #SIOD a rare genetic life limiting dwarfism disease and he bought her some time. So when he started peeing blood a few weeks ago concern was obviously raised. Three doctor appointments and a CT scan later and here we are getting his large kidney stone removed. In his surgeons words, "since you only have the one kidney now we treat this emergent to make sure we keep that one working at its best."
The girls helped Joe come up with his 2019 word prior to all of this and the word is STRONG. Good work girls, he is our rock. Strong in body, mind and emotion for "his girls"!
Edit UPDATE on our patient: He is finally resting and about back to baseline glad it is done. He had a stent removed Monday, which helped!π
In light of the recent kidney challenges between Emily's spilling protein and Joe's kidney stone procedure, I wanted to bring focus to the renal disease portion of #SIOD .
GeneReviews states, "All affected individuals have progressive steroid-resistant nephropathy, usually developing within five years of the diagnosis of growth failure and terminating with end-stage renal disease (ESRD). All tested individuals have T-cell deficiency and associated risk for opportunistic infection, a common cause of death."
A friend wrote recently on one of my posts and I feel this is our mantra this year: "There is Strong and then there is Koesters Strong!" #believeinemily #littlegiants #dwarfismawareness #daddysgirl #transplant #kidney #donate #life #Nebraska #researchfunding
#transplant #kidney #livingdonor #daddy #love #believe #family #littlegiants
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