Liam's Story

Liam's  Story

While we try to teach our children about life,  our children teach us what life is all about. - angela schwindt

My husband Chris and I were blessed with a beautiful baby boy named Liam on January 2, 2008. The meaning of his name is "Powerful Warrior" and little did we know what the future would bring for Liam and our family.

When Liam turned 4 months old, he began spiking high fevers. His cyclical fevers came every month and lasted 5-7 days like clockwork. After 10 months of multiple doctor visits, blood tests, and specialists, not one doctor could explain why this was happening to Liam, including a pediatric hematologist/oncologist.

Liam's fevers started to become more frequent, happening twice a month and lasting a bit longer each time. On March 24, 2009, Liam was admitted to Children's Hospital in Aurora, CO. He stopped eating, was extremely lethargic, experienced excessive sweating, became very jaundiced, presented with an extremely distended abdomen, and was in obvious pain. Liam underwent various diagnostics including x-rays, ultrasounds, lumbar puncture, and bone marrow biopsy. The results were devastating.

---

" ON   MARCH 26, 2009, 14  MONTH   OLD   LIAM   SCHULZE   WAS   DIAGNOSED 
                                                              WITH   HEMOPHAGOCYTIC  LYMPHOHISTIOCYTOSIS OR HLH. "

Liam had been fighting this disease for nearly 10 months before it became full blown, which was a miracle in itself. After some research, we decided to take Liam to Cincinnati Children's Hospital since the expert in the field of HLH, Dr.Lisa Filipovich, was there. Liam was admitted on April 15, 2009. He would need a bone marrow transplant (BMT) to have any chance at survival. However, they did not predict it would be so difficult to find Liam a suitable bone marrow match. Out of approximately 13 million people worldwide, there was not one suitable match for our little Liam.

As they continued to search and search, Liam was treated with
chemotherapy and steroids among other medications. He had a rare HLA typing and therefore a sufficient bone marrow match was never found. As a result, Liam remained on chemo and steroid treatments for approximately 4 months, which was longer than the HLH 2004 protocol suggests. His only option was to use umbilical cord blood for his transplant, which was only a 4/6 match.

Liam's BMT took place on July 30, 2009. Forty-one days post BMT, our brave son earned his angel wings on 9-9-09 in my arms. He fought extremely hard through this process but his little body couldn't fight the adenoviral pneumonitis. Liam's cord blood transplant was a success with a 93% donor cell engraftment. 

. WE   COULDN'T   BE   MORE   PROUD   TO   CALL   HIM   OUR   SON .

Liam's Video

Radio

LIAM'S LIGHTHOUSE FOUNDATION RADIO INTERVIEW ON 98.5  KRZ "OUTLOOK ON NORTHEAST PA" 

---

Liam's Legacy

​Sweet boy named Liam;
A precious son.
A foundation built
of a mother's love.
A lighthouse brightly shines
in honor of his memory.

For this dear boy lost his life
to a rare, unknown disease.
The finding of a cure is yearned,
by those with love and hope.
Bringing awareness to many others
are helping families to cope.
​
An Awareness Event is being held,
just outside the Today Show,
Friends and families are gathering,
to make Histiocytosis known.

​We are honoring heroes' lives,
who know this rare disease.
They have battled and still fight.
They are part of our family.

Together we'll make a difference,
all across the nation.
If you want to help the histio heroes
in their fight, support:
Liam's Lighthouse Foundation.

By: Bobbi Kaufman

---