Our Story

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...

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Updates

Latest Updates

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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... Continue Reading »

Past Fundraisers

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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... Continue Reading »

Day 715 – Bus Time

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The special education bus service which takes Everett (and big sisters) to school and brings Everett home officially began today! Despite the fact that Everett had never even... Continue Reading »

Day 713 – First Day of PreK!

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Everett had a great first day of PreK! He is enrolled in an inclusive half-day program for 3 year olds at our local primary school...which means the Big... Continue Reading »

Day 708 – Successful Surgery!

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UPDATE: Surgery went well and they successfully removed both the line from his ventricle and the port device from his chest! Additionally, Everett has been so healthy lately... Continue Reading »

Day 707 – Unexpected Surgery

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Everett and Daddy returned to Sinai for his monthly check-up only to discover his port stopped working. After a dye-test fluoroscopy and echocardiogram, it appears the line has... Continue Reading »

HAPPY 3RD BIRTHDAY, EVERETT!!!

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Today, Everett celebrated his third birthday surrounded by more than 80 loving family and friends. We were thrilled that so many supportive people were in attendance for his... Continue Reading »

Family Roadtrip!

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Everett (and family) thoroughly enjoyed our first family vacation! It was so wonderful to be able to introduce Everett to family in Cape Cod, Dracut and Leicester, Massachusetts!... Continue Reading »

Day 690 – Therapy Champ

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Big guy powered through multiple therapy sessions today like a champ. For the first time in months, he was playing with playdough without gagging! And no tears, just... Continue Reading »