I Wept During my Zoom Meeting

 I wept during my weekly chapter Centersphere zoom meeting yesterday.  I was sad for sure, yet when it was my turn to share about LGF and what we need or who would be a good referral I was overcome with the day's happenings that I had been enduring behind the scenes in addition to sharing about another child lost to SIOD.

Like the Chumbawamba song, "I get knocked down, but I get up again!  You are never gonna keep me down."  I allowed myself time to decompress overnight and this morning I got up again with renewed spirit and energy as I typically do throughout this medical journey we are on with our Emily.

For those who aren't aware, or perhaps don't know, I have become the type of woman who goes after it and figures it out along the way later.  It may not be the best advice from your latest life coach, but it has served me quite well, especially over the past decade in my 40's on multiple occasions.  Much like the time where I decided to push myself further into running and my mental game and signed up for my first half marathon a few years ago.  This is the shirt I wore to train in on my long run days and for the day of the big event.  Why?  Wearing it wrapped me in the embrace of energy of these children and their families.  I ran all 13.1 miles.  This was NOT easy for me even with nearly 5 months of training.  I really don't even like running.  I enjoy working out and health and fitness, but running wears on my, I'm rather slow, and it can be hard on my body and lungs ( I have asthma).  But- we were asking our daughter, Emily to push herself through grueling therapies after her hip reconstruction surgery and she became my biggest cheerleader and coach during this time.  She is always my inspiration and I added these children to help keep me going as well.  Most of the children are one's we "met" through our transplant, cancer, rare disease, or SIOD medical experiences.  Some children are of prior friends we had who tragically lost their children for various reasons.  I went to my closet last night to look at my shirt and realized that not only more children's lives have been lost that need to be edited and added and we have also virtually met more families of SIOD.  I also realized I need another shirt!  I have run out of room.  It isn't right.  It isn't fair.  I am particularly impacted by our SIOD children and their families since this is what Emily has and as we strive to be a beacon of hope for all through Emily's miraculous journey thus far, I get so emotionally invested in EACH and EVERY single family we are blessed to come into paths with.  My heart hurts and I get sick to my stomach EACH and EVERY time another child succumbs to SIOD, like poor little Brunette, age 3 of France who is being laid to rest today.

  I weep for each child upon diagnosis, complication and death.  I question if what I am doing, have been doing and have planned can be or ever will be enough?  Let me be clear, in my heart of hearts, I know without a doubt I am doing all I can and I know this, yet it doesn't ever seem to be fast enough to help save these children.  I am a very optimistic, idealistic type of gal as well and let me shout this loud for those in the back to hear:  I HAVE A VSION BEYOND OUR RESOURCES FOR LGF!!!!  Once more:  I HAVE A VISION BEYOND OUR CURRENT RESOURCES FOR LGF!

Please listen and hear me when I say that I BELIEVE we will raise the funding needed for SIOD research, we will continue to the beacon for families past, present and future, and we will gather the resources we desperately need to see our vision through!  How you ask?  I of course have a plan, a road map, but it will be done, it has to be done, but NOT without YOUR continued support and help.  If you want to know specifics and join in our fight please continue to follow our journey, reach out and let us know because TOGETHER WE CAN DO SOMETHING EXTRAORDINARY!

Behind the scenes I was caught up in our current Governor's state decision to take people with disabilities off of the COVID19 vaccine list.  I am not wanting to nor will I debate about politics, and this pandemic,  but if you are so inclined and would like to sign this petition if you are a Nebraska resident, we would appreciate it on behalf of our Emily and other other children and people with compromised immune systems:

http://www.arc-nebraska.org/prioritize_disability_vaccine_access?recruiter_id=5794

Thank you!  Feel free to share as well.

Believe-

Warrior SIOD mama on a mission with vision!

Emily the Mighty SIOD Warrior

 

Little Giants Foundation is not only a voice and face for those diagnosed with #SIOD like our  mighty SIOD warrior, Emily, it also provides support for research, connects those affected with SIOD and works to enhance awareness with families, doctors, researchers, and educators along with public and private parties.

Supporters like you help make our research and treatment a reality for those families that suffer from SIOD. For those who have been following our journey please wear RED like our friend, Sansa at Children's Hospital where the Mighty SIOD Warrior gets her infusions. Tomorrow,  February 11th help us raise SIOD awareness for not only Emily, but all children afflicted with this life limiting disease. We want you to be an active member of our community, too. Your support means that you understand just how valuable bringing awareness to those diagnosed with rare forms of Dwarfism- in particular -Schimke Immuno-osseous Dysplasia (SIOD) is.

Please tag us on your social media sites #believeinemily tomorrow!  We are BLESSED to know you and have your support. #blessed #believe #donate #littlegiants #warrior #princess

Emily's Nebraska Little Giants Day- WEAR RED

 Help us raise awareness for SIOD and the LIttle Giants Foundation by joining us in Wearing Red for Emily on February 11th, her governor proclaimed Nebraska Little Giants Day! Be sure to tag us on your social media sites. #SIODresearch #emilystrong #LGFnonprofit

Merry Christmas and Happy New Year

 

We hope everyone had a joyous, peaceful, safe and healthy Christmas celebrating in your circles.

We only had my parents over with protocols in place.  Nebraska got a lovely snowfall before Christmas and then after we got 7" where we live!  Taylor-Jo was very happy and Emily and Pumpkin endured the cold for a short time and photo opp!  Hahaha.

We'd like to remind you that our affiliate Midlands Community Foundation is Matching Funds through Jan 5, 2021, so there is still time to donate for year end or beginning of 2021.

https://thelittlegiantsfoundation.org/donate-index-impact

We are hopeful for 2021 and can't wait to share what is coming...

Season's Greetings

 

As we count our blessings that both Joe and Emily seem to have recovered primarily from their COVID19 experiences we want to take a minute to wish you Joy in your hearts, Peace in your souls and the abundance of health in your lives.

We at LGF also thank you once again for your support in our foundation and our Emily.  You are helping to make a difference in not only her life, but other children affected with SIOD past, present and future.

Below are a few links and attachments: Feel free to share the articles and videos in your circles.

Here's to a Happy, Abundant, Healthy New Year-

Erin Koesters- Executive Director of Little Giants Foundation

https://thelittlegiantsfoundation.org/

Be sure to check out the EVENTS section for our sponsor logos and watch our new video on the HOME page made by our UNO collaborative- Kylie Squiers Photography

Our feature story in Edge Magazine: http://edgemagazine.com/defy-all-odds/

Our recent Stanford Project Goal: https://my.supportlpch.org/fundraiser/2910768

Infusions and COVID

 Despite our best efforts, COVID19 entered our home these past several weeks and hit Daddy Joe real hard and knocked Emily down, but not out.  Taylor-Jo and I were asymptomatic at first and then had mild symptoms.

Below is what we had been doing and continue to do because not everyone chooses to wear a mask to help protect others like our Emily who is immune suppressed.  We also have been remote learning since March and continue to do so this school year, limit family and friends to only a select FEW adhering to CDC guidelines before, during and after these short visits that have been few and far between if at all.

Before COVID-19 we have taken precautions all of Emily's life.  Emily was born premature and we had home precautions in place from the get go before she was even diagnosed with SIOD.  Here are our health and wellness practices that we have instilled for her entire life and depending on what virus or season of illness presented itself, we would step up our precautions accordingly:

*remote healthcare
*wash hands with soap and water for 30-40 seconds
* avoid crowds
*limit public interactions
* wipe down knobs, handles, keys, remotes, phones
*change clothes after being out in public or after school
*shower after being out in public or after school
* Lysol purses, backpacks, bags
* wipe down steering wheels and doors handles
*wear masks in public
*UV light to clean controllers, laptops, keys, phones
*take shoes off at door
*limit visitors

The CDC states that, "serious underlying medical conditions (like SIOD) are at a higher risk for more serious complications from COVID-19", and we do not take  that lightly as we have family members  and friends as well who are immune suppressed due to cancer, transplants and other health issues that qualify them without being of the older population.

Children with SIOD, and really any chronically ill child, become resistant to effective strains of defense over time as they are used to these lines of medications in their medical journeys and therefore even a cold can be detrimental to them.

Gene Reviews/NCBI has a publication with Morimoto & Boerkoel (both from Canada during our initial research) Lucke of Germany and yes, Lewis from Stanford even before he took over the SIOD research from Boerkoel, where they talk about T Cell deficiency first published in 2002 and updated in 2016.  "Immunodeficiency increases the risk of opportunistic infections such as pneumonia.  More than half of individuals with SIOD have recurrent infections with bacteria, viruses and fungi.  Infection is a common cause of death."

After a few ER visits and lots of tender loving care, medications and conversations with Emily's doctors at Nebraska Med and Stanford we know things are improving and better than what they could have been.  We are thankful for that.

Emily got her IVIG today and labs so I will be interested to see how those are today as she improves.

COVID19, SIOD and Cover Photos

 My oh my what a whirlwind of a week thus far.  COVID19 may have hit our family, but it won't keep us down.  Well, maybe a little, okay, maybe a lot, yet we are fighters.  Thank heavens Emily's symptoms after her ER visit Wednesday haven't grown any.  She is better than last week and keeping mild symptoms of plugged up nose, headaches, fatigue and some tightening of the chest so she uses her inhaler.

Daddy Joe, however; has been doing worse than Emily and had to go on oxygen at home and then to the ER last night and is back home and getting relief from a steroid shot in his IV and meds at home to help assist his lungs as a chest x-ray and CT scan showed he has COVID going on in there.

Taylor-Jo and I stayed asymptomatic until recently.  Our symptoms are real mild and we keep repeating that we are healthy, strong and will remain so for our family.

Amidst all of this COVID craziness we are still thankful for the health we do have, for our family remaining home together, for the kindness of friends and family and for our supporters of LGF.

Giving Tuesday was a giant success and Matching Funds also started.  There's so much happening and to check out:

1. Our new video made by our SLA UNO Capstone students (Kylie Squiers Photography)

Believe In Little Giants Foundation

2. Emily's Cover Photo and Article in the Edge Magazine

Defy All Odds

3. Matching Funds with our affiliate MCF

BELIEVE