Rare Disease Day!

When we have general discussions of Mila we had traditionally said she has special needs.  This is not a true description of her nor does it portray the trials we will one day experience.  Mila has a "Rare Disease."  We are not trying to get sympathy.  We need to highlight how rare this is because both prayers and awareness are the only ways we can take this trial and give God Glory.  Prayers of his beloved and getting other people with rare diseases help is, and should be, our objective because if this rarity causes hardship because it is rare, then why would we label it anything but.  

Mila is amazing!  We moved her in with her big sister because they both wanted a "Roommate."  Mila talks in a yell or a whisper so we know when those 2 are chatting it up.  She LOVES "Baby shark" and laughs uncontrollably at her siblings (she yearns to be included).  She is still a whopping 20 pounds but with an emerging teenage personality... We love this girl so much and want to do right by her.  

The Myhre Syndrome Foundation (www.myhresyndrome.org) is getting very close to being an approved 501c3.  We have been working with some families to start an international Organization that will create awareness, and raise money to support families, research and God willing a cure,for our rare community in this world. 

So... since today is "Rare Disease Day" I wanted to share a little on rare diseases in the hope that you may feel inclined to support.  A disease may be RARE by diagnosis but it does not have to remain RARE with awareness.

What is a rare disease?

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. 

How many rare diseases are there?

There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. This estimate has been used by the rare disease community for several decades to highlight that while individual diseases may be rare, the total number of people with a rare disease is large. 

In the United States, only a few types of rare diseases are tracked when a person is diagnosed. These include certain infectious diseases, birth defects, and cancers. It also includes the diseases on state newborn screening tests. Because most rare diseases are not tracked, it is hard to determine the exact number of rare diseases or how many people are affected.

What causes rare diseases?

There are many different causes of rare diseases. The majority are thought to be genetic, directly caused by changes in genes or chromosomes. In some cases, genetic changes that cause disease are passed from one generation to the next. In other cases, they occur randomly in a person who is the first in a family to be diagnosed.
Many rare diseases, including infections, some rare cancers, and some autoimmune diseases, are not inherited. While researchers are learning more each year, the exact cause of many rare diseases is still unknown.

What is being done to develop treatments for rare diseases?

Researchers have made progress in learning how to diagnose, treat, and even prevent a variety of rare diseases. However, there is still much to do because most rare diseases have no treatments.  

Myhre has no treatments!!