Grant's Wish 5k - May 4th

Many of you have been our friends and family long before we could spell galactosemia.

 

Many of you know us because of galactosemia.

 

Some of you may have even met us along the way, without ever realizing galactosemia was such a huge part of our lives.

 

Whatever has brought you here.  This post is for you. 

For those of you who are thinking, "WHAT is she rambling about?  Is someone sick?"

 

Well.  Kinda.

 

Galactosemia is a rare genetic metabolic disorder.

1 in 60,000 births, so they say.

Galactosemia does not have a cure, nor does it really have a treatment.

Currently, galactosemics follow a controversial diet as their only form of "treatment" in the hopes of minimizing or coping with complications such as:

cataracts

learning disabilities

speech difficulties

liver failure

kidney failure

brain damage

premature ovarian failure

tremors

and more....

 

Those of you who know our Annie, may or may not know that she is galactosemic.

 

Currently Annie has defied all the odds.  She is seemingly complication free, despite being galactosemic.  Not all of Annie's friends have been so lucky, nor are we guaranteed the same health in the future.  Annie maintains a strict dairy free diet.  At three and a half, she has never tasted a "gold fish" cracker, an ice cream cone, or an M&M.  She never will.  All in hopes of dodging some of galactosemia's worst complications.

 

One of the most frustrating aspects regarding galactosemia is the lack of information.  Being so rare, very little research has been done.  As parents we are constantly searching for answers to make sure we are caring for Annie the best we can, and struggling to find ways to ensure her future health.

 

On Saturday, May 4th a fundraiser will be held supporting galactosemia research and awareness.

Please consider joining us or donating to this cause:

Grant's Wish

http://www.galactosemiamidwest.com/tg_event/grants-wish-5k/

 

Annie's Wish = Grant's Wish