Allie Remarski

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Allie loved sports,school, helping people, listening to music & was obsessed with sneakers!  She must have had a hundred pairs!

She was the best daughter in the world.  She was my best friend.  She loved to go to football games with her father.  They would go to the Patriots & tailgate for hours.  She played softball, hockey & ice skated.
Allie had a smile that would light up a room.  It didn’t matter how much pain she was in.  She’d make the best of whatever she could do
She inspired so many people with her love for life.  She never said “I can’t”!
Allie suffered for many years.  She never stopped fighting!  I also have Mito & she always thought of me before herself
So many people prayed for her.  She became friends with Nurses & CNA’s during her many hospital stays  Most of her CNA’s weren’t much older than her & they became friends.  I still talk to some of them 8 years later & it’s nice to hear some of the happy things she said & did with them, even with a wheelchair, oxygen, IV’s etc  She also had many surgeries.
Unfortunately we had a tough time with the medical community.  Doctor after doctor told her she had psychiatric problems & was seeking drugs.  They didn’t believe she was sick.
Our goal has always been to make more people in the medical community be aware of Rare Diseases, such as Mitochondrial Disease & not take away needed pain medicine & other meds needed to help function   It wasn’t until she went to Hospice & her organs were shutting down that some doctors that heard about it thought about how awful they treated our family
Since Allie’s passing we have been doing Fundraising & Advocating for a Cure for Mito.  Allie would be proud that we’re teaching people what Mito is.
Our hearts are broken.  We did everything we knew how to help her get diagnosed (which took several years) & treated.  Unfortunately there is no treatment, or only treating the symptoms & most of the time our insurance wouldn’t cover what she needed.
A few years ago MASS GENERAL HOSPITAL opened a Mito Clinic.  With lots of hard work, Michael & Judi Goldberg head up the non profit, Hugs for Mito! Your donations go toward Research & Medical Necessities that go directly to a patient in need.  My husband, Mike & I are proud to contribute to Hugs for Mito because we know the money donated goes right to that clinic & their patients.
Allie, we love & miss you so much.  Our hearts will never heal.  The only things that helps us go on is knowing you’re not suffering anymore & you’re with God.  We will all be together again 💚
I’ll love you forever
I’ll like you for always
As long as I’m living
My baby you’ll be
Love Mom, Dad & Steve