How privileged we are to have such faithful and caring friends as you. Thank you for sharing the unexpected journey of these last two tumultuous years with us. An update is certainly long overdue. In this weird vortex of chronic “sick time” we find ourselves feeling persistently left of center, and the energy to right the ship enough to communicate lucidly with you has been in shockingly low supply. But here we go!

It feels like another lifetime ago that we began to see troubling signs that something was not right for our vibrant and healthy 12-year-old, Lottie Joy. Her Down Syndrome diagnosis had been a near non-factor in Lottie’s robust participation in her full and connected life up to that point. But over a few short weeks in the fall of 2023, we watched in panic as Lottie slipped away from us. First anxious and resistant, she rapidly stopped speaking and then walking. Soon she wouldn’t crawl, until finally she was unable to lift her head or make eye contact with us, lost in a fully catatonic state. The horror of those days traumatized us all.

Overnight we transitioned into full time care mode, pulling Lottie from school, buying a wheelchair, carrying her to the bathroom on the hour, feeding her, all the while crying over the senseless loss of this joyful, independent bit of sunshine that we’d come to take for granted. Through the spring of 2024 we were in a perpetual scramble, frantic to figure out what was happening. We spent two different weeks at Children’s Mercy Hospital, ran countless labs and tests, poured through medical journals and Facebook boards, and searched for any specialist who might help us to make sense of this nightmare.

One medication worked to wake Lottie up from the severity of her catatonic state. Our joy at hearing her voice and the relief of seeing her take a few tenuous independent steps were short lived as this new wakefulness seemed to come at a cost. Hallucinations overtook Lottie’s brain. This next expression of her body’s distress became the most unnerving part of this long journey to date.

Summer and Fall 2024 found Lottie still completely dependent on 24-hour care, as her brain suffered terribly from a constant barrage of chaotic traffic.  We watched helplessly as she engaged with the characters in her mind, many of them accusatory and cruel.  Day and night, we rode the unpredictable waves of Lottie’s despair, terror, and rage. Holding my little girl through 45 minutes of fearful shaking, angry shouting, rejected sobbing, and manic hilarity has been hell.

Through our dogged research over months, we finally came to understand that Lottie was suffering from a rare condition called Down Syndrome Regression Disorder.  A massive turning point came with our discovery of Dr. Jonathon Santoro, the world’s foremost expert in the research and treatment of DSRD.  In January we made the long drive to Los Angeles Children’s Hospital for Lottie to become his patient.

Working in collaboration with our KC Children’s Mercy Hospital, Lottie began getting treatments of IVIG every three weeks (Intravenous Immunoglobin is a concentrated solution of healthy antibodies).  We’ve felt our breath return as we’ve watched this line of treatment offer significant relief for Lottie.

By May 2025 we were thrilled to say goodbye to the wheelchair, cheering as she was able to independently walk into the hospital. These days we find joy in our daily walks (up to one mile!) through our local Oak Park Mall. We estimate that Lottie has regained about 80% of her physical abilities. Cognitively capable of more complex thinking, she is starting to engage in life thru simple things like helping in the kitchen. We see little glimmers of her goofy humor coming back and she always knows who her mom and dad are (our very close relationship has become a sacred treasure to us).

Her psychological healing has unfortunately progressed more slowly. Lottie is still frequently plagued by loud voices in her head, and insomnia steals our sleep several times a week. Since she can become dysregulated in severe ways by seemingly small daily experiences, we’ve worked hard to turn our home into a safe bubble, laboring diligently to avoid the tumultuous waves that might upset her fragile nervous system. Attending school remains impossible as Lottie has only been apart from Laura or me a handful of times over the past two years.

What’s next? 

In January 2026 we will head back to Los Angeles for our one-year appointment with Dr. Santoro.  We expect that he will recommend that we titrate down to a less frequent maintenance dose of IVIG as the maximum benefits of this treatment are usually seen within one year. A next line of treatment will hopefully be available to try to help improve Lottie’s psychological state.  We are also considering various forms of brain interventions as possible means to “rewire” some of the trauma signaling that continues to plague her.

A High Price

We have been so generously helped and sustained by so many dear friends this year.  Thank you!  Even with some wonderful assistance, we have lost the bulk of our savings from the sale of our home in 2022.  Each IVIG treatment is $16,000 and insurance has denied our requests for coverage three times.  With these treatments every three weeks, supplements, specialists, and caregivers, the cost for 2025 will be about $200,000.  We anticipate that 2026 and 2027 will cost a combined $250,000.

The reality we face is that we no longer have the fiscal capacity to continue to care for Lottie in the ways we have this year. I have had to adapt my counseling work to be available for as much of the day as possible, and my emotional capacity has diminished as well through the strain of such hyper-vigilant caregiving.  The thought of losing the ground we’ve made this year for lack of funding for LJ’s care keeps me awake at night. Honestly, it’s unbearable to imagine.

Raising Angel Investors

These next two years are critical for Lottie’s care. If we can continue to reduce the inflammation in her body and in her brain, we can then help rewire her brain to be free from the voices that she contends with every day.  We are seeking investors…angels really…who have the capacity to help us raise $250,000 to help our dear girl over these next two years.  Would you consider helping us? You would certainly be investing in Lottie’s care, but you’d also be building into our whole family. Laura’s and my longevity as caregivers, and my ability to focus on the many open doors of strategic relational ministry to leaders would be deeply impacted by your support.

All investments are being raised as tax-deductible contributions through a National Christian Foundation account called The Lottie Pierce Angel Supporters Fund (#6035962).   The folks at NCF will transfer these funds to a separate fund called Helping Hands – which is a special fund designed to pay medical expenses directly to the medical providers.

Through this “sick time”, our five other kids are working their way through senior years, proms, college struggles, and beginnings and endings of various sorts.  One beautiful moment for our family was the celebration of our daughter Ella’s wedding this summer to her high school sweetheart, Ethan.  It was a beautiful ray of sunshine in our year!

Prisoners of Hope

This season of profound suffering has forged a deep well of humility for Laura and me as we’ve experienced the gift of immense strength and wisdom given as a graced provision beyond our own capacities to cope. As I was writing a note to a new friend this week, I was again reminded of Zechariah 9:12 which says, “Return to your stronghold, O prisoners of hope!” As we continue to slog through the overwhelm of uncontrollable and prolonged distress, we lean heavily on the complex hope of Divine Presence uniquely and intimately known. What sweet mercy to return time and time again to the deeper hope of intimacy over control, nearness instead of escape, and the enduring peace of the good news that can only be fully experienced within the surrender of vulnerability.

Grateful for you!

Rick and Laura Pierce