Shire's Fund

The worst words you can hear as a parent is that your child is sick.  Worse still is when you hear that your child has a rare disease for which there is no cure and that your child will die.  That is exactly what happened to Shire Marquez, daughter of Anthony and Cheyenne. 

Shire was born on May 19, 2011 and is a beautiful little nugget.  She’s about four feet tall, weighs a solid 50lbs, and has dark hair and these HUGE doe eyes.  One look at her and you’re hooked!  She’s had a rough go of it since birth her parents have been working through one challenge after another with her.  Shire has had several medical and developmental issues that no one could ever really figure out until a pediatrician finally thought to get some specialists involved which brings us to where we are today.  Someone finally figured out what was really going on with Shire and that brings us to today.

Shire has a Fucosidosis, a disease that is diagnosed less than 100 times a year…globally.  Without getting overly complex with the specific medical terminology, Shire’s body does not produce an enzyme that breaks down a sugar molecule.  What happens with this disease is that the molecule is partially broken down but the remnants collect in her body and become toxic.  This toxicity causes damage to cells and will eventually lead to multi-system organ failure and death.  In the best cases patients with this disease live fifteen years or so.  Unfortunately, Shire is not in that category and is expected to have a much shorter life.  Shire is currently under the care of Hospice so that she is as comfortable as possible for her remaining time with her family. 

We do not know how long Shire has left but what we do know is that her family needs our help.  Cheyenne has cut her work hours to almost zero so she can be there to take care of Shire and her husband Anthony has taken on more jobs to help keep the family afloat.

What I am asking is that you give what you can, whenever you can, for as long as you can.  Shire needs care 24/7/365 and insurance only covers so much.  Every penny counts and if everyone that I know donates $20.00 then that will cover almost a year of care.  Multiply that by the people that Anthony and Cheyenne know and we’re in business. 

Please share this with everyone you know.  I’m starting this fund raiser with the Norwich community because we take care of our own.  What I would love to see is that this spreads to your friends, family, and community so that we can do the right thing to help this little girl and her family be a little more comfortable in what will be the hardest part of their lives.