Down Syndrome Awareness Month

Dear family and friends,
How are you? We hope you are all well and happy. At the moment we are all well and happy. October is Down Syndrome Awareness month. In order to do our part, we would like to share some of the experiences we’ve had with our daughter Lacy with you.
Lacy was born on Aug.29th 2004. She was born with an extra 21 chromosome.
The Scientific name for this is Trisomy 21. It is one of 3 different types
of what is commonly called “Down Syndrome”. A scientist who did a lot of
research about these genetic variations’ last name is Down. So they named it after him. The exact causes of the syndrome and prevention of it are currently unknown. Down Syndrome is something an individual has, not something they are.

Having an extra 21st chromosome brings a lot of other extra’s along with it. In Lacy’s case, and about 30-50% of other babies born with Down Syndrome, she was born with an extra hole in her heart. This meant extra time spent in the hospital when she was born (just 2 weeks) and taking home some extra things with us to help take care of her before she could have it fixed. She was on oxygen 24 hrs. a day. She also had to learn to eat from a bottle which took some extra time. She was extra small and brought out extra love and concern in everyone around her. After extra Dr. appts. to make sure they understood her condition, her cardiologists and surgeon fixed her heart when she was 6 months old. This experience brought extra prayers and fasting and extra stress and comfort to everyone involved. Lacy is now doing well and only has to wear oxygen when sleeping to help with some high blood pressure in her lungs which we hope in time will go away.
She is one of approximately 5,000 babies who were born with Down Syndrome in the united states in 2004. This equals out to be about 1 in every 800-1,000 live births per year. We, and she now know extra wonderful, good and fun people just like her. We have also had extra help from people in the community who work with children who have physical and mental delays.
We have learned so much and appreciate all of the love, support and help we have had since she has come into our lives.

Lacy is extra friendly. She says “HI”, to everyone she sees. She is extra loving and wants almost everyone to hold her. She gives us extra kisses and sometimes extra headaches when we don’t have her full attention. She gets extra excited to go to nursery each Sunday and likes to make her mother, and brothers chase her through the halls a lot too. She is extra flexible because she has low muscle tone and is fun for her brothers to swing around.
She is extra bossy to her younger sister and extra attentive to her dad when he is trying to watch T.V. It will take Lacy extra time to become an independent person in this life, but she and all other people with Down Syndrome have his/her own unique personality, capabilities and talents.
Currently Lacy attends special needs pre-school at Shelly Elementary 2 times a week. She is also going to soon be joining a dance group called “Sparkly Pals”. It is a Utah County dance group for children with Down Syndrome.
We love all of the extra’s Lacy has brought into our lives. We love her
so much, and know that we still have a lot to learn about Down Syndrome, and everything else involved with raising our family. Thanks for letting us share!
To learn more about Down Syndrome go to www.udsf.org Love ya, Dan and Amy Knight



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