Hi, my name is Josie. I live in Northglenn, Colorado with my husband Martin and our 2 sons, Isaiah and Isaac. I am the President of a new national non-profit organization, The VACTERL Network and I also belong to the Denver VACTERL Support Group.

The VACTERL Network was established to provide support to families who have a child born with VACTERL or adults with VACTERL. The purpose of our organization is to share resources, tips and information among the families. We are a resource to individuals to help make the journey with VACTERL as easy as possible.

One of our goals is to bring awareness to VACTERL. I am guessing that many of you reading this have probably never heard of this, neither had I until my son was born. VACTERL is an acronym for physical birth defects or anomalies that occur together in some children, there is a full description at the end. While VACTERL may not be as commonly known as Down Syndrome or Cerebral Palsy, it is just as important and has the same emotional ups and downs.

Children with VACTERL have many medical procedures and surgeries that are performed on them. To date my 2 1/2 year old has had 6 surgeries, several MRI's, cat scans, and dozens of x-rays. He has also had heart tests, ultrasounds for his kidneys, intestinal tests and countless doctor and hospital visits. My son is on the mild side of everything, some of these children have had up to 35 surgeries.

We will be conducting an educational seminar for families living with VACTERL next summer. It will be an opportunity for individuals to learn about the latest medical procedures from medical specialist in each area of VACTERL. Since every person born with VACTERL is different, it is a great opportunity to ask very specific questions to issues they may be dealing with. It is also good for our VACTERL children to meet other kids and young adults that have VACTERL.

Currently there is not any research being conducted and we are hopeful that we can branch out into the research arena. We are currently in the process of petitioning the State Boards of Health to make it a requirement for doctors and hospitals to report it when a child is born with VACTERL. In the future we would also like to help families with financial aid if possible. Many of them struggle with medical costs, medical supply costs, and durable medical equipment costs.

I know that this is not a common condition, but there are many children and families that are dealing with this in their lives every single day. These children go through more things than they should have to, but they always seem to have smiles on their faces. The things they go through would make most grown people curl up in bed for days, but they just keep growing and keep going.

If you choose us to receive the $1000 award it would help us so much in bringing much needed awareness to VACTERL and helping get our organization up and going. It has been very difficult raising funds since VACTERL is so unknown. All of the funds have come out of the Board of Directors pockets or from family and friends so it would be wonderful if you can give us consideration for this award.

If you would like more information, please do not hesitate to contact me at mandjq1989@yahoo.com.

Thank You
Josephine Quijas

VACTERL is an acronym for the following issues:

(V) - Vertebrae problems - abnormally formed vertebrae, tethered spinal cord, extra ribs, missing ribs and tailbone, etc.

(A) - Anal anomalies/rectal problems - no anal opening

(C) - Cardiac problems - minor to massive heart problems.

(T) - Trachea (windpipe) - improper connections between trachea and esophagus.

(E) - Esophagus - part of the esophagus connecting the mouth and stomach is missing.

(R) - Renal (kidney) - abnormal kidney(s).

(L) - Limb - various hand, feet and leg problems, missing bone structures are common.

There are some children that have the full presentation of VACTERL and some that don't. A child must have at least 3 of these to be categorized as having VACTERL. While the majority of children with VACTERL Association have normal intelligence, they may have delayed growth and development in the early years