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Bringing Up Down Syndrome

What is B.U.D.S. ???

B.U.D.S. is a non-profit organization that was started in 2003 that benefits anyone in North Alabama that is impacted by Down syndrome.

Down syndrome is a genetic condition that occurs in approximately one in every 800-1,00 live births. It affects people of all ages, races and economic levels. It is the most frequently occurring chromosomal abnormality. It occurs when there are three rather than two, number 21 chromosomes present in every cell of the body. Instead of the usual 46 chromosomes, a person with Down syndrome has 47. It is this additional genetic material that alters the course of development and causes the characteristics associated with the syndrome. More than 350,000 people in the United States alone have Down syndrome. Each of these individuals touches the lives of family members, educators, employers, health care professionals, peers and others. This network of people who are affected by Down syndrome numbers in the millions.

Approximately 5,000 children with Down syndrome are born each year. The cause of Down syndrome is completely unknown and it occurs at the moment of conception. It is generally assumed that babies with Down syndrome are born to older mothers, however this is untrue, 80% of children born with Down syndrome are born to mothers under the age of 35. This is where B.U.D.S. comes in!

WHAT DOES B.U.D.S DO?

With the money raised by B.U.D.S. we are able to provide “New Parent Packets” to all families who have children born with Down syndrome before they even leave the hospital. This is extremely critical because this is usually a new families very 1 st experience with the “concept” of Down syndrome as they are trying to not only digest being brand new parents, but parents to a child that is not at all like the one they were anticipating. The child is still just as precious a gift, just a gift in a different package. Just as the wind has been completely knocked out of this new set of parents, we show up with not only the personal knowledge and experience of, having been right where they are ourselves, but also a new set of “tools” for them in the form of our “New Parent Packets”. These packets contain books and other resources that families can use as a hands on reference immediately. These books and references contain most up to date information from birth to adulthood regarding their family member and their specific needs at every stage.

Tools are purchased to further aid in the education of Down Syndrome in our local schools and libraries. We provide tools and resources that are current and updated for our local Early Intervention programs getting individuals off to a good start. We are able to send families to National conferences so they can better understand new developments in research, gain knowledge to help enhance the development for their family member, and celebrate while enjoying all of the fun that goes on between family members and professional in our community at large on a national level.

We supply resources to families that may include everything from books, references, and materials, to activities provided, promoted, and available locally and nationally. We also help with assorted support for major medical issues, or just the basics that come up as families’ journey through the life process.

What has B.U.D.S. already done???

In just 10 short months since the start of B.U.D.S. we have had flowers delivered at each new child’s birth congratulating the families on their brand new gifts, followed by the “New parent packets” full of resources. We have welcomed over 10 brand new babies in the past 6 months alone, just in North Alabama. We have also lost 3 very special children under the age of two (each child belonging to a different family), to different major medical complications. B.U.D.S. has stepped in and helped these families in many ways over the course of each family’s journey from the diagnosis until the devastating loss of their child. These journeys have lasted anywhere from 4 to 9 months depending on the condition. B.U.D.S. helped out continually along the way. These costs have included everything from gas money for hospital trips, medication, lodging at the Ronald McDonald house, change for a vending snack, parking fees, care package supplies while staying at the hospital complete with pre-paid phone cards and basic necessaries to flowers and Peace Lilies sent to the funeral. We have also helped with different needs afterwards with everything from meals for these families to rolls of stamps for the families for the thank you cards sent to everyone who sent flowers, thoughts and prayers over these very long journeys. We have even sent a family on an all expenses paid trip because their child was to young to qualify for, The Make-A-Wish Foundation.

What is B.U.D.S. planning for the future???

In the spring of 2006 we will be launching a new program called, “Changing Lives .” We will be meeting with medical providers, nurses, doctors, pediatricians, O.B.G.Y.N.’s, family practitioners, hospital director’s and social workers, by going into the hospitals and medical providers offices and presenting information on how to deal with a brand new diagnosis for a family. The focus will naturally be toward Down syndrome, but will help the professional with a brand new special needs diagnosis for any new family. It will give them a new perspective of what it is like to be on the other side of that diagnosis and just what goes on from a new family’s perspective. It will give them insight to better understand and help in reference to the life time relationship they will begin with that family. Along with each presentation we will provide current literature and facts that are up to date, with the latest cutting edge research, statistics and info available.

With each new child born and every new experience presented, B.U.D.S. is finding new ways daily to be a better resource in North Alabama for Down syndrome advocacy and awareness in our community locally. There is so much that we have ahead of us and we have only just begun! With each new opportunity for growth a new opportunity arises that we never even dreamed of. There are so many needs we are seeking to meet.

Thank you,

Tamyra Yarbrough
B.U.D.S. Founder and Director, also the mother of Ross, an amazing 3 year old who happens to have Down syndrome.

It is because of my biggest inspiration in life, Ross that there is a group called B.U.D.S.