The Little Giants Foundation

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 childr

en 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.

08/14/2026

♥️Three weeks ago, we began this rehabilitation journey not knowing exactly what the days ahead would hold.
Today, we’re celebrating three weeks of hard work… and looking forward to just one more week until discharge.
Every day has brought progress. Some steps have been big, others barely visible. But every single one has mattered.
Home isn’t the finish line—it’s the beginning of the next phase of recovery. We’re grateful for how far Emily has come and hopeful for all that’s still ahead.
Thank you for walking this road with us. Your prayers, messages, and support have carried us more than you’ll ever know.
One week until home. 🏡

Why We Golf ⛳️ This tournament is about more than golf.It’s about families who need our research support during the hard...
08/13/2026

Why We Golf ⛳️
This tournament is about more than golf.
It’s about families who need our research support during the hardest diagnosis of their lives.
It’s about showing up.
It’s about community.
It’s about believing in our mission.
On October 3rd, every putt, sponsorship, and shared laugh on the course helps Little Giants Foundation continue serving medically complex children and their families through SIOD research.
Thank you for helping us turn compassion into action.

We had our discharge planning meeting, and if all goes accordingly, August 21 will be the day Emily leaves inpatient reh...
08/12/2026

We had our discharge planning meeting, and if all goes accordingly, August 21 will be the day Emily leaves inpatient rehab.
It’s amazing how one date can bring so many emotions. A few weeks ago, we were praying for stability in the Neuro ICU. Now, we’re preparing for life beyond these hospital walls.
While we’re excited to bring Emily home, we also know discharge doesn’t mean the journey is over. It simply means we’re entering a new chapter—one filled with continued therapies, more appointments, adapting to a new baseline of Emily’s cares, and still celebrating every milestone along the way.
We’re incredibly grateful for every therapist, nurse, physician, and staff member who has poured into Emily. They’ve not only cared for her, they’ve patiently prepared us to care for her at home.
This meeting was an opportunity for us to ask the hard questions and help us prepare the best we can for life at home.
Emily is One step closer to home. Please continue sending good vibes while she is here recovering and for a smooth transition on the 21st.

✨ 60 Days Until Lourdes ✨In just 60 days, Emily and I will begin a journey we’ve been blessed to receive.This isn’t just...
08/12/2026

✨ 60 Days Until Lourdes ✨
In just 60 days, Emily and I will begin a journey we’ve been blessed to receive.
This isn’t just a trip to France. It’s a medical pilgrimage to Lourdes—a place where people from around the world come seeking healing, hope, peace, and strength.
After all this summer has held, we don’t know exactly what lies ahead. But we do know we’ll arrive with grateful hearts, carrying our prayers, the prayers of those we love, and hope for whatever is in store at this place of miracles.
For the next 60 days, we’ll be continuing to count down to Lourdes. If there’s something on your heart, we’d be honored to carry your prayer intentions with us.
💙 60 days.
🕊️ One pilgrimage.
🇫🇷 A journey of faith, hope, and healing.

This weekend, Emily needed something just as important as therapy… rest.After weeks of intense rehabilitation and being ...
08/10/2026

This weekend, Emily needed something just as important as therapy… rest.

After weeks of intense rehabilitation and being away from home even longer, the emotional exhaustion has become as heavy as the physical work. The tears have come easily lately, and she’s been crying to go home. There are moments when the weight of missing it feels overwhelming.

So this weekend, we embraced the pause. No therapy sessions. Only space to breathe, to cry when needed, to rest, and let her mind and body recover.

If you think of Emily this week, we’d be grateful for prayers and positive energy that her heart finds peace, her spirit is renewed, and that each day brings her one step closer to home.

Thirty days.30 days since life changed in our SIOD world once again.16 days at UNMC, including 14 in the Neuro ICU. 14 d...
08/07/2026

Thirty days.
30 days since life changed in our SIOD world once again.
16 days at UNMC, including 14 in the Neuro ICU.
14 days now at Madonna, where the hard work of rehabilitation continues.
Some days have brought too many aches and pains. Some have brought tiny victories that feel enormous. Every day has required courage, patience, and hope.
We’re not where we want to be yet, but we’re grateful we’re not where we started.
Emily continues to remain determined to get back to her baseline before the multiple seizures and strokes. She is exhausted and Joe and I aren’t quite sure she has ever really awakened fully.
Thank goodness for a rest and recovery break this weekend. Her only therapy will be sleeping and eating.
We keep on keeping on with one day, one therapy session, one small victory to ring her little bell at a time.

08/05/2026

The past week has stretched us, challenged us, and given us reasons for more hope.

Rather than try to explain it, I thought I’d simply show you.

This is what courage looks like.

🏌️‍♂️⛳ Mark Your Calendars! ⛳🏌️‍♀️We’re excited for our 3rd Annual Charity Golf Tournament benefiting Little Giants Foun...
08/04/2026

🏌️‍♂️⛳ Mark Your Calendars! ⛳🏌️‍♀️

We’re excited for our 3rd Annual Charity Golf Tournament benefiting Little Giants Foundation!

Join us for a day of golf, community, laughter, and purpose as we come together to support complex medical research for SIOD. Every swing, sponsorship, and raffle ticket helps make a real difference. ♥️

📅 Date: 10-3-26
📍 Location: Ashland Golf Course
⏰ Time: Shotgun @11

Whether you’re golfing, sponsoring, donating, or cheering from the sidelines — you’re helping us create hope and support for extraordinary SIOD families.

✨ Team registration
✨ Sponsorship opportunities
✨ Prizes, raffles & community fun
✨ Making an impact together

Gather your foursome and help us make Year 3 our biggest one yet!

https://events.golfstatus.com/event/2026-little-giants-foundation-golf-tournament

08/03/2026

Nighttime has become our time. Emily and I talk about everything. Sometimes we laugh. Sometimes we sit in comfortable silence. And sometimes… a conversation comes along that stops me in my tracks.
I happened to capture one of those moments on video.
I won’t say much more. I’ll let Emily’s words speak for themselves. (Turn up the volume)

One week.Seven days since we arrived at rehab from a few week hospitalization, and somehow it feels like both yesterday ...
08/01/2026

One week.
Seven days since we arrived at rehab from a few week hospitalization, and somehow it feels like both yesterday and a lifetime ago.
We’ve seen progress, and for that we are incredibly grateful. Emily is working harder than I ever imagined possible. Every day she pushes through exhausting therapy sessions, relearns movements that once came so naturally, and refuses to give up. We couldn’t be more proud of her.
But if I’m honest, this week has also been heavy.
Living away from home. Missing Taylor-Jo. Trying to keep our family connected while life continues in two different places. Wondering how we’ll manage another several weeks here. Watching someone you love work so hard just to do the simplest things is both inspiring and heartbreaking.
Stroke and seizure recovery is humbling. It requires patience whether you’re ready for it or not. It reminds you that healing isn’t measured by giant leaps, but by inches… by one more movement, one more transfer, one more word, one more step.
There is still so much work ahead of us. Some days that feels overwhelming. But then Emily shows up again the next morning, ready to fight for another day of recovery, and she reminds all of us what courage looks like. She says, “I’m determined.”
So today we’re choosing gratitude—for the progress we’ve seen, for the incredible rehab team walking beside us, and for every one of you who continues to pray, encourage, and lift our family up.
One week down.
A long road still lies ahead,there’s so much that happens each day that I feel I could fill pages of writing,and perhaps one day I will. But for now we are grateful we’re not walking alone.

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Gretna, NE
68028

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