Only Child Living with SIOD in Nebraska

Emily is the ONLY child LIVING with SIOD in GRETNA, in NEBRASKA and in the MIDWEST!
OUR GOAL IS 1K MONTHLY PLEDGES! JOIN US!
Here at The Little Giants Foundation we think about, dream about, and Believe it will work! It has to.
Join our movement to fund #SIOD research and show your year-round passion for helping to find a cure! #gretnalife #nebraska #midwest #rally #funding #research #giveback #littlegiantsfoundation

Click on the DONATE link to set up your pledge today!  Click the drop down menu option!

HomeTown Hero NCBB & LGF Blood Drive

                                               From Last Year- This year on July 11th

In honor of Emily's upcoming 17th birthday, the Little Giants Foundation will be holding a Blood Drive on July 11th at TBA in Nebraska from 9 a.m. - 12 p.m.

The special thing about the Nebraska Community Blood Bank Hometown Hero Drives is that you can give back to your community in more than one way by participating. Not only are you donating blood to Nebraska residents, but money will be raised and donated to the Little Giants Foundation.

This will be the Little Giants Foundation's third year being honored as the Hometown Hero and we feel beyond blessed to see members from the community come together to help make an impact and so many lives.

We continue to fight each day by believing. Believing that each day fighting to stay alive will one day lead to a cure to Emily's rare genetic disease. With the help of others, we might be able to raise enough money to help fund research in finding a cure.

Information

For being in quarantine we sure are busy. Hahaha.
The girls wrapped up their school year with me and their distance learning, and we are awaiting better weather here in Nebraska so they can jump into our constructed pool Daddy puts up each year.
Omaha Gives was a great success for the foundation and our t-shirt sales have exceeded our goal and we still have 8 more days to get orders in!

customink.com/fundraising/little-giants-foundation

Today Emily has her marathon infusions of her every 21 day IVIG and quarterly pamidronate.  SIOD children have compromised immune systems and the IVIG is an immunoglobulin therapy that helps to give a little boost to help fight infections that these kiddos cannot fight on their own and the pamidronate is for her bone density.

Omaha Gives Believe Board of Donors

 

  Ready to head out to get infusions and labs

May continues to Bloom

May continues to bloom for us at the Little Giants Foundation despite the odds stacked against us all during COVID19.  Our hope is that those reading this are staying safe and well.  We are grateful for the abundance of kindness and generosity that others have shown during this uncertain time.  It humbles us once again to see how empathetic people are to think of us.

Last week we had a local DJ- Alex Pearson with DJAMP take it upon himself to hold a virtual trivia night for our non-profit and raise $855 from the goodness of people donating to our cause.  Such a huge help as we have had to cancel and postpone events due to COVID19.  But the research cannot be cancelled or postponed for SIOD.  The funding has to stay steady and increase to help save not only our Emily, but other children now and in the future.

We still have our pledge drive for ONE THOUSAND people donating $10 a month for our 2020 goal of $100,000 for research at Stanford.  Last week we updated our LGF gear and have some stylin shirts and sweatshirts as well.  Our goal is 50 to start to print and we are getting closer.  Here is the link to order: https://www.customink.com/fundraising/little-giants-foundation?ref=copy-link_social_desktop-campaign-page-share-top-v3&utm_campaign=desktop-campaign-page-share-top-v3&utm_content=little-giants-foundation&utm_medium=social&utm_source=copy-link&side=back&type=4&zoom=false

Emily is holding her own and knock on wood her numbers are stable enough for her and despite a few more aches and pains most likely due to the decrease in therapy work, she is having good days.

The girls finish distance learning on Friday the 15th and then "summer" unofficially begins.  And Taylor-Jo will be turning NINE on the 19th!

Omaha Gives is May 20th although we are taking scheduled donations now at https://www.omahagives.org/index.php?section=organizations&action=overview&fwID=2025

And finally- our gardens are planted although we need to get filler flowers at some point.  We are ready to tend to the outdoor life here on our little acreage in Nebraska and get ready for the next event and the next time we get to hang out in person with friends and family.

BELIEVE

Kidney Celebration

May 6, 2008 Daddy Joe gave his kidney to Emily to help prolong her life!  Little did we know at the age of 4 this would be the beginning to her #SIOD diagnosis and many, many challenges to come.
Yesterday we celebrated their 12 year kidney birthday.  In their honor we have come out with updated Little Giant shirts, hoodies and crew neck sweatshirts!  Here is the link.  Our goal is 50 to start and get them printed and sent out!
Little Giants Gear- click to purchase!

Here are a few pics from our family of four celebration after Emily's every 21 day IVIG infusion was over last night:

Happy Earth Day and More!

Happy Earth Day All!
Today the girls and I worked on a science project sent from Grandma K that we hung in the windows once completed and now we will watch to see if our flowers grow and see the life cycle of water before our eyes!

As the Nebraska weather turns more like a traditional Spring we are getting outdoors on the acreage to move our bodies more, enjoy the sunshine while it is still cool enough as SIOD children like Emily are very sensitive to the heat and sunlight.

We sent out our quarterly newsletter last week via mail and email. If you have not received one and would like to please go to our website and fill out the form for future mailings.  Shout out to KNOCK OUT printing in Omaha for their KNOCK OUT pricing they gave us!  And a special thanks to our UNO Service Learning students for helping to create this quarter's newsletter.

I wanted to talk a moment about therapy and special needs, not only for Emily and SIOD children, but for any families out there as we are "without" services for quite some time now due to COVID19.
Here is what we are doing while not going to therapies of HETRA (equine therapy) and Aquatherapy or School PT:

1. Keep as active as possible whatever ability that is.
  When it isn't nice enough out we walk laps in the house or make obstacle coursed depending on ability.  We do yoga or stretch.  ( I'm talking 5-10 minutes at a time)

2. Call or email your services to help provide you with at home therapies.
  We have a plan laid out from Emily's PT school therapist as she was hurting more in her hips.

3. Take advantage of what your therapy places may be providing to keep the face to face virtual connections: (ie: HETRA is providing webinars for their riders to learn more about horses in different ways and Emily has received mail as well, which really makes a difference in keeping those relationships strong)

These are a few ways to keep your special needs child moving and less aches and pains while away from services.  We are stepping up our game at home as she is having more aches in her arms now as well- with the help of her therapists I will add.  The girls used "survivor" skills and made Emily a splint for her arm even!  How cute!

Please note our upcoming events in the graphic as well!
BELIEVE-

Keep On Keeping On

Like many of our non-profit friends and small businesses in particular we are tackling each day like we typically would with working towards our goals and finding new ways of communicating and raising awareness for our missions.

Although we have had to cancel and/or postpone events we had planned we are looking forward to these:

Our ongoing 2020 Pledge 10 Campaign
*One thousand people donating 10 dollars a month to raise 100,000 dollars!

May 20, 2020 online Omaha Gives initiative

July 11, 2020  Emily's Hometown Hero Blood Drive with NCBB

TENTATIVE postpone new date from May 8 to July 25- Omaha StormChasers Night at the Ballpark

October 4, 2020 our biggest annual event: LGF Farm Run (registration is open)