Our Little Warrior, Everett


Read the latest blog post: Day 715 - Bus Time

Transplant Day Countdown - Day -9

Our Little Warriors NORMAL Immune System!

On Everett's recent visit to Duke at the start of May, we learned that his immune system has achieved NORMAL levels! Read more about our little warrior's visit in blog post Drumroll, Please...

Thank you, Carly!

On March 19 at the Fredrick Gymnastics Club, one of Everett's big sisters attended the 7th birthday party for her friend and fellow Girl Scout, Carly. In lieu of gifts, the birthday girl Carly asked for donations to be made to COTA in honor of our Everett. Carly and her family made collection canisters and set up an information table regarding Everett and his journey. Carly's mom collected checks and cash, and many attendees donated to Everett's campaign online.

Because of Carly's selflessness and generosity, more than $500 was raised for COTA in honor of Everett! The Staruk family is so touched and extremely grateful to Carly, her family and all of the attendees that donated. Carly, YOU ROCK!

An Amazing Donation Bumps Us to Over 80% of Our Goal!

We have received an amazing donation of $10,000 from McCormick & Company! A family friend who works at the company organized an employee fundraiser, which managed to pull in $5,000. The company matched the amount, bringing the total donation to a whopping $10,000!!!

We are so thankful for the generous employees and owners of McCormick for this incredible gift! We are now over 80% to our goal of $100,000!

Thank you for your Giving Tuesday support!

Thanks to everyone who took the time to donate this past Tuesday, known as Giving Tuesday (the first Tuesday after Thanksgiving)! We raised over $3,000 as a result of your generosity, which COTA will match!

Team Everett is so thankful for all of our friends, family, and supporters who have supported and cheered along our Little Warrior these past 15, going on 16 months!

The Team Everett Yard Sale 2016 was a great success!!!

We received an enormous number of donations for our 2016 Team Everett Yard Sale this past Saturday, October 22nd, at Christ Reformed Church in Middletown, MD. A whopping $3,037.63 will be donated to COTA in honor of Everett!

Thank you so much to everyone who coordinated, advertised, donated items, prepared delicious baked goods, shopped for items, donated funds and volunteered their time to make the event so successful! Our precious little guy is so blessed to have an entire community of people to support him.







Everett is home and with his entire family again! Our Little Warrior's immune system is weak still, so he must remain in isolation and cannot see any unscheduled visitors, but the entire family is so grateful to be back together.

Everett's journey is by no means over, and your support is still valued immensely. Stay tuned for upcoming fundraisers and events, and thank you so much!

Disney-Themed Benefit Concert for Everett at Middletown High School - August 5, 2016

HUGE thanks to local dance school, Dee Buchanan Studio of Dance, which performed a Disney-themed benefit concert for Team Everett! It was a fun-filled evening, and Everett's Big Sisters and cousin had a great time! All donations and proceeds from the raffle ticket sales were donated to Team Everett!


Middletown Chamber of Commerce Anniversary Party Donation - August 3, 2016

We would like to extend a giant THANK YOU to Autumn Hollis and the Middletown Area Chamber of Commerce for donating $500 to COTA in honor of Everett and inviting Everett's mommy to be a guest of honor at their Anniversary Party on August 3rd!

We are sincerely grateful and humbled to be a part of such a supportive and loving community!



On August 14, 2014, Tom and Haylee Staruk welcomed their first son, Everett, into the world. He joined two Big Sisters, Aurore and Matilda, and brought immediate joy to the family.

In late July at the age of 11 months, Everett was diagnosed with Pelizaeus-Merzbacher Disease (PMD), a rare form of leukodystrophy. PMD is a genetic condition characterized by the disintegration of and/or inability to form myelin, the insulating sheath that protects neurons and promotes the transmission of nerve impulses.

To Everett, PMD means impaired intellectual functions, such as language and memory, and delayed motor skills, such as coordination and walking. Typically, motor skills are more severely affected than intellectual function. This was confirmed recently by neurocognitive tests that Everett took at Duke University Medical Center in Durham, North Carolina, which showed that his language and social/behavioral skills are all right on track with his age. His significant delays appear in the lack of development of his gross and fine motor skills. In individuals with PMD, motor skills development tends to occur more slowly and usually stops in a person's teens, followed by gradual deterioration.

In August, Everett was accepted into a bone marrow (stem cell) transplant program at Duke University Medical Center. The blood cord registry quickly found a match, and insurance has given the go-ahead. It is hoped that the transplant will replace the cells that don't produce enough myelin in Everett's brain with cells that do. In doing so, the impact of PMD on Everett's life could be greatly reduced.


When faced with the daunting financial challenge of a bone marrow transplant, Tom and Haylee turned to The Children's Organ Transplant Association (COTA). COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. With their help, friends and family have come together to help raise $100,000 for COTA in honor of Everett.

Every dollar donated to COTA will be available for any transplant-related expenses, including posttransplant recovery and ongoing maintenance for years to come.


Upcoming Fundraisers:

Coming soon!

See the Activities and Events page for details!