Join Enzo Russell's Fight Against LCH

**Help Enzo Russell Fight Langerhans Cell Histiocytosis**

Hi, my name is Jamie Russell, dad to 7 amazing children including my first born son, Enzo. Enzo is 11 years old, and he's been battling Langerhans Cell Histiocytosis (LCH) for the last couple of years. LCH is a rare cancer-like disorder that causes cells in his immune system to attack parts of his body.

In 2022, we discovered that Enzo had a tumor on his skull which led to his diagnosis of LCH, a disease so rare that only a couple hundred people are diagnosed with it each year. Enzo had to undergo an emergency craniotomy at Nemour's Children's Hospital here in Orlando to remove the tumor. It was tough, but he pushed through like the warrior that he is.

Follow up scans that year showed that the LCH lesions grew back almost immediately, and we outsourced care to Dr. McClain at Texas Children's Hospital and Dr. Kumar at Cincinnati Children's Hospital. Both doctors have dedicated their careers to understanding and treating Histio conditions and have provided tremendous support. We visited both hospitals and agreed on a wait and see approach, since some one-time patients grow out of the disease.

While some lesions resolved on their own, others grew back. Ultimately, in May 2024 it progressed to the point where the LCH was impacting bones that were more high risk- including the sphenoid bone and the femur.

Seeking to avoid the effects of chemotherapy, which is the traditional first line treatment for LCH, we tried the gene inhibitor Mekinist through Dr. Kumar's program out of Cincinnati. We hoped that this special gene inhibitor treatment would stop the disease without more invasive procedures. Unfortunately, that treatment wasn’t enough due to the mutation Enzo has, called MAP2K1, and Enzo's doctors have jointly decided that year-long chemotherapy treatment is the only path forward.

There are two options for chemo, one a bit more invasive than the other. Several days ago, Nemours approved this chemo option that thankfully does not include a daily steroid component. Today we signed the consent paperwork, and treatment will begin within days.

While this next step is scary for all of us, Enzo is ready to fight harder than ever and we are all behind him 100%. We do not know what God's plan is for Enzo and our family during this time, but we are eyes wide open looking for ways that he will use us.

We are asking for your support during this journey. Between medical expenses, hospital admissions, and time away from work - we know it can add up quickly. We are fortunate to have quality healthcare insurance that should cover most of the treatment costs themselves, but we know there will be many ancillary costs that come with it.

Any donation, share, or comment with words of encouragement would mean the world to us as we take on this next chapter of Enzo's journey.

We want to point out that Enzo's LCH effects his bone only, which makes the disease not life threatening, which we are abundantly grateful for as we know many families do not have the same prognosis.

Thank you for your kindness, prayers, and positive thoughts—they keep us strong every day.

With love,

Jamie Russell and Family