Emersyn & Brittany; a story of hope, courage, support, and LOVE || Boston Children's Hospital

Emersyn & Brittany

Courage, Change, Hope, & Love

“Hi There … My Name is Brittany … I’m married to my best friend and we have three beautiful children and two crazy german shepherds.”

This was my introduction to Brittany and her beautiful family; to her Emmy.

“Last Tuesday, 8/27, my oldest daughter was admitted to Boston Children’s Hospital and Friday 8/30 diagnosed with MPAL (mixed phenotype Acute leukemia). Our whole world has been turned upside down. Her name is Emersyn and she is 13. She would have been starting 8th grade at Lewiston Middle school.

Boston Children’s Hospital is no stranger to us. We have been traveling here for 10 years to visit a group of specialist who take care of Emersyn. At age 3 she was diagnosed with Ataxia Telangectasia which is a very rare genetic disorder. This type of leukemia is rare as well. It seems to be our thing “rare.” Emersyn has an amazing humor, very intelligent, and very beautiful.”

“She is going to lose her hair… I specifically want to capture a session of her and I shaving each others heads.

The cries, the uncertainty, the laughs, and the love we have for each other.”

Emmy, & her mother, Brittany

Emmy, & her mother, Brittany

I hardly made it through the initial email before writing back “Yes. I’m there.”  I didn’t know what else, how else, or in any other way to say that I wanted to be a part of something so important, something so thoroughly selfless.  

As a Mom, I can’t imagine any of this.  I work closely with Catalyst For Change Wear, where together we work with incredible organizations like Maine Children’s Cancer Program, Barbara Bush Children’s Hospital, I work with A Sisters Wish, Now I lay me down to sleep, as well as the Make A Wish foundation and I can say with full certainly that there is absolutely not amount of exposure that can prepare you to stand with someone who holds courage and bravery in the grips of their hands and the hope in their eyes for their child.

Brittany, I am SO honored to have been a part of this beautiful act of stoicism, hope, and LOVE.  You’re radiant, and damnnnngirl you rock that new hair.

I asked Brittany if she’d like to have Emersyn’s story told, and this is what she’s shared…

Emersyn, 13

Emersyn, 13

Emersyn was diagnosed with Ataxia Telangectasia at the age of 3. A-T is a rare, progressive, degenerative disease. Most kids are confined to a wheelchair by the age of ten. They have compromised immune systems and are at 1000 time higher risk of developing cancer of the blood system. Currently the life expectancy is early to mid twenties.

Rare seems to be our life. Emersyn was admitted to Boston Children’s Hospital on August 27th and on August 30th diagnosed with a rare form of leukemia called MPAL (Mixed Phenotype Acute Leukemia). She started chemotherapy that same night. Her first round of chemo will last 29 days inpatient at BCH. If cancer cells are still present at 29 days we will begin round 2 still inpatient.

Because Emersyn has A-T she cannot receive radiation which is what they typically would use to treat this cancer. Instead she is receiving an aggressive dose of chemo in both her PICC line and into her spinal fluid via a lumbar puncture twice a week.  We have a very long road ahead of us. The doctors are preparing us for 2 years of chemo. Some will be inpatient, outpatient and at home. 

Our world was turned upside down in a matter of four days. We knew this was a possibility however never imagined it would be us telling this story. We are in the fight of our lives and we know our strong, brave girl will come out on top. We can’t wait to tell our story of how she beat the odds ❤️

My one organization that I have been fundraising for, for 10 years now is The A-T Children’s Project (www.atcp.org). They are the only non profit organization that is out there that support Ataxia Telangectasia. They use the money to find life improving therapies and a cure for A-T, which right now there currently isn’t. For the first time, hopefully this year they are waiting on FDA, will perform gene therapy on a little girl in hopes to reverse the gene that causes A-T. 

This organization lacks funding because the disease is rare and only effects 500 kids in the US. So they rely on families to fundraise to support them and is very much a grass roots effort.