The Little Giants Foundation

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The Little Giants Foundation LGF works with families & doctors around the world to raise awareness & funding for SIOD research. Join our fight! Together, we can do something extraordinary.

Emily was diagnosed with Schimke Immuno-osseous Dysplasia—a complicated medical term for one of the rarest forms of Dwarfism. Unlike most dwarfs you’ve seen, Emily is proportioned and stands 41 inches tall. Her condition is so rare that Emily is only one of six others in the United States who have been diagnosed with Schimke, and one of only 45 across the world. It’s believed that many more children may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure or stroke before they’ve been accurately diagnosed.Doctors in British Columbia, who have worked on their own time, money and resources, have cloned another patient’s genes and believe that Ataluren (originally developed for those with Muscular Dystrophy) could bypass the gene mutation for children with Schimke. This is a shovel-ready project that offers extraordinary promise — Little Giants Foundation (www.LittleGiantsFoundation.org & www.littlegiantsfoundation.blogspot.com) were formed to share this advancement with others and to assist with the $3 million dollars needed to complete the research and testing. Our Main Goals

• To become a voice for those diagnosed with rare forms of Dwarfisms

• To support research, studies and experimental testing that offer life-saving hope

• To connect those who are affected with rare forms of Dwarfisms with each other
and to provide vital information and news that can strengthen our fight

• To enhance awareness of rare Dwarfism among the public, private, government,
and health insurance parties

• To educate the medical community about Schimke and other rare forms of
Dwarfisms to reduce the incident of misdiagnosis

Little Giants Foundation is a component fund of Gretna Community Foundation an Affiliated Fund of the Midlands Community Foundation, a Nebraska 501(c)(3) Non Profit Corporation, whose tax ID is 51-0191738.

🤍🇫🇷 LOURDES, FRANCE — A JOURNEY MY MAMA HEART WILL NEVER FORGET.Our pilgrimage to Lourdes was a gift I will cherish fore...
10/19/2026

🤍🇫🇷 LOURDES, FRANCE — A JOURNEY MY MAMA HEART WILL NEVER FORGET.

Our pilgrimage to Lourdes was a gift I will cherish forever. For Emily, it meant growing deeper in her Catholic faith and receiving the Eucharist daily. For me, although I’m not Catholic, it was a deeply spiritual journey filled with mew family, hope, and moments of grace.

We bathed together in the waters of Lourdes, shared beautiful moments, and carried so many prayers in our hearts.

After everything Emily has endured, being able to experience this together was more meaningful than words can express. One thing she kept telling me was how happy she was that we were there together. ❤️

I went to Lourdes praying and wishing for healing, carrying a mother’s hopes, fears, and dreams for her child. I came home knowing that no matter what the future holds, I was given the gift of being there, beside my girl, in a place filled with miracles.

And if Emily remembers Lourdes for its faith, its miracles, and its prayers, I will forever remember the happiness in her voice when she said she was glad we were there together.

Because I may not be able to promise her an easy journey through life, but I will forever be grateful for every journey I get to take by her side. 🤍🙏🏻

🇫🇷❤️ TOMORROW, WE LEAVE FOR LOURDES. ❤️🇫🇷After everything this summer has brought us… tomorrow, Emily and I begin a jour...
10/09/2026

🇫🇷❤️ TOMORROW, WE LEAVE FOR LOURDES. ❤️🇫🇷

After everything this summer has brought us… tomorrow, Emily and I begin a journey that once felt so far away.

This isn’t a vacation. It’s a medical pilgrimage for healing. A journey of faith, hope, and surrender. A chance to bring our intentions, our fears, our gratitude, and all the things we cannot put into words to a place where so many people come seeking comfort and healing.

We are leaving with hearts that have been through a lot.

We know healing doesn’t always look the way we imagine. We know faith doesn’t mean having all the answers. And we know how precious it is simply to have the opportunity to take this journey together.

Since Emily’s baptism, this trip has taken on an even deeper meaning. She will be able to receive the Eucharist each day in Lourdes—a gift I will never take for granted as her mom.

Tomorrow, we carry more than our suitcases.

We carry the intentions and prayers of our family and friends. The intentions of those who have entrusted us with their hopes. The weight of a difficult summer. And a whole lot more.

One mama. One daughter. One extraordinary journey.

Lourdes, here we come. 🇫🇷🙏❤️

Please keep us in your thoughts as we begin this adventure.

Having been a former teacher of 20 years and a writer myself, I always welcome student involvement in our outreach. I am...
10/06/2026

Having been a former teacher of 20 years and a writer myself, I always welcome student involvement in our outreach. I am very pleased with how this article turned out and feel Ella did a fantastic job piecing this together and she did her research. Bravo. 👏

“Every day is a gift.”

For the Koesters family, those words carry a weight most families will never have to understand.

Their daughter Emily is one of only about 100 people worldwide reported to have SIOD, an ultra-rare, life-limiting genetic disease. Tomorrow, a golf tournament will bring their family one step closer to a goal they have spent years pursuing.

Find out what they’re fighting for and why the tournament means so much to the Gretna family.

Read the full story by at GretnaEastMedia.com.

First wave of photos coming in from our golf ⛳️ charity event Saturday. So many great prizes and people to help shine li...
10/05/2026

First wave of photos coming in from our golf ⛳️ charity event Saturday.
So many great prizes and people to help shine light on

What an incredible day. Thank you to every golfer, sponsor, volunteer, donor and supporter who helped make our 3rd Annua...
10/04/2026

What an incredible day. Thank you to every golfer, sponsor, volunteer, donor and supporter who helped make our 3rd Annual Little Giants Foundation Golf Charity Tournament possible. Together, we truly can do something extraordinary.
More to come…

10/03/2026

It’s tournament day! 🏌️❤️ Today we’re swinging for SIOD, celebrating our supporters and raising hope for ALL SIOD children. Follow along with us throughout the day in our stories!

10/02/2026

Tomorrow! The Little Giants Foundation golf tournament is almost here. Thank you for helping us swing for SIOD and for believing that Together We Can Do Something Extraordinary.

We are falling in love with AUTUMN. 🍂 And not only is this Breast Cancer 💖Awareness Month- it is also Dwarfism 💚Awarenes...
10/02/2026

We are falling in love with AUTUMN. 🍂 And not only is this Breast Cancer 💖Awareness Month- it is also Dwarfism 💚Awareness Month.

Emily has SIOD and is a little person. Her dwarfism type is a rare form of . She is 23 and a warrior princess winning each day despite her life limiting disease of .

Together We Can Do Something Extraordinary!

09/29/2026

3 DAYS! 🏌️❤️ We’re almost ready to tee it up for SIOD! Help us make this year’s Little Giants Foundation Golf Charity Tournament extraordinary. Last chance to register, sponsor or support the mission.

🏌️‍♀️🎯 THE GOLF BALL DROP IS BACK! 🎯🏌️‍♂️And once again, we’re dropping them from the NO LIMITS TREE SERVICE BOOM TRUCK!...
09/28/2026

🏌️‍♀️🎯 THE GOLF BALL DROP IS BACK! 🎯🏌️‍♂️

And once again, we’re dropping them from the NO LIMITS TREE SERVICE BOOM TRUCK! 🚚💥

🎯 10 golf balls for $20
🎯 Closest to the Pin wins!
🎯 Buy your golf balls NOW from ANYWHERE, USA or DAY OF THE EVENT
🎯 You do NOT have to be a golfer—or even attend the tournament—to play!

🔥 CLAIM YOUR $20 GOLF BALLS NOW!
📲 Message us to purchase your golf balls, or grab yours at the event!

📅 Saturday, October 3, 2026
📍 Ashland Golf Course

Then watch as hundreds of golf balls rain down from the NO LIMITS TREE SERVICE BOOM TRUCK! 🎯⛳️

Which ball will land closest to the pin? 🏆

❤️ Every dollar helps support Little Giants Foundation and life-saving SIOD research.

Address

Gretna, NE
68028

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