How We Got Here

The journey from the first small symptoms to diagnosis and start of treatment was a long, winding one. The following is a timeline of what Everett, Tom, and Haylee went through to get where they are today.

August 14, 2014 - Everett Is Born!

Everett was born to parents Tom and Haylee Staruk.

September 2014 - Brain Sonogram

When Everett was 4 weeks old, Tom and Haylee noticed that his head would tremor occasionally. The family pediatrician was not concerned, but Tom and Haylee scheduled an appointment with a pediatric neurologist anyway. The neurologist believed that Everett was simply neurologically immature due to his small size, which she didn't see as anything serious at that stage of development. However, as a precaution, she did order a brain sonogram for Everett, which came back “normal.”

October 2014 - MRI and Initial Diagnosis

Everett’s eyes began involuntarily oscillating (nystagmus), and the pediatric neurologist ordered an MRI of his brain to rule out any major complications. At 14 weeks old, the MRI was conducted at Children’s National in Washington, D.C. Afterward, Tom and Haylee were told that the MRI looked good, and everything was “normal.”

Since all of the imaging indicated there were no complications with Everett’s brain, he was diagnosed with spasmus nutans, a benign condition involving head nodding and nystagmus, which typically resolves by age 3.

February 2015 - Physical Therapy

Everett's pediatrician referred them to the local Infants & Toddlers program because Everett had poor muscle tone and was failing to reach developmental milestones. Everett began weekly physical therapy and monthly occupational therapy sessions to help him catch up. During therapy sessions, the physical therapist noticed that Everett did not reach or track for toys, which caused Tom and Haylee to become concerned about his vision.

April 2015 - Conflicting Symptoms

At 8 months old, Tom and Haylee took Everett to a pediatric neuro-ophthalmologist at Johns Hopkins. After examining Everett, the doctor told Tom and Haylee that, despite the nystagmus and intermittent strabismus (crossed-eyes), Everett has great vision. Taking into account the "normal" MRI, the neuro-ophthalmologist agreed with the spasmus nutans diagnosis. However, as spasmus nutans does not cause any delay in milestones, he referred Everett to a developmental pediatrician.

May 2015 - Second Opinion

Everett's new developmental pediatrician at Kennedy Krieger Institute conducted an assessment. A pediatric radiologist at Johns Hopkins was consulted for a second opinion of the original MRI that was conducted when Everett was 14 weeks old. The second opinion of the MRI indicated that Everett had a delay in myelination of the brain.

Myelin is the insulation that protects nerves and promotes the efficient transmission of nerve impulses. A lack of myelin can cause a variety of issues involving impaired intellectual and physical functions. Tom and Haylee knew immediately that Everett’s condition was serious.

July 2015 - New Diagnosis: PMD

On June 30th, when Everett was 10 ½ months old, a new MRI was conducted by Johns Hopkins in Baltimore, MD. This second MRI confirmed that Everett’s brain does not make enough myelin, and he was diagnosed with leukodystrophy.

A few weeks later, Just after Everett turned 11 months old, genetic testing confirmed that Everett has a specific type of leukodystrophy known as Pelizaeus-Merzbacher Disease (PMD).

August 2015 - Eligibility Testing

Everett and Tom and Haylee traveled to Duke University Medical Center in Durham, North Carolina, to complete 2 weeks of testing to see if Everett was eligible to be a candidate for a new treatment for PMD. The treatment, a bone marrow (stem cell) transplant, has had success in other children with PMD, allowing their bodies to produce more myelin and, thus, diminishing the impact of this condition on their quality of life.

The verdict after many, many (sometimes painful) tests?...ELIGIBLE! The new came on August 13th, just one day before Everett turned 1 year old. What a great birthday present!

On August 19th, a donor match had been found for Everett in the cord blood registry, and insurance had approved of the procedure!

September 2015 - Beginning Treatment and Looking Forward

After a small delay caused by a short-lived illness and fever, Everett began the first step toward his bone marrow (stem cell) transplant: Chemotherapy.

The transplant process will take approximately 8 months from start to recovery. Everett, our little warrior, has taken everything in stride and with a big smile, and we all know he'll battle through this treatment! All he needs is love and support from his family and friends, and there's a limitless supply of that!