Kristopher "KRITTERBUG"

Kristopher "Kritterbug" ~ Full Trisomy 13  

12/13/2005 - 05/19/2012

 

My son Kristopher was born with Full Trisomy 13 on 12/13/05. He was 6lbs 8oz. and had a cleft lip and palate. He had rocker bottom feet and a little finger attached to his pinkie. He was in the NICU for 10 days until we received his bloodwork back that identified him as having Full Trisomy 13. We brought him home under the instruction to "Make him comfortable at home". During the first year of Kritter's life, he was in and out of the hospital a lot. We had his lip repaired at about 5 months of age. We had a peg tube in place for feeding as he could not swallow anything due to the cleft palate. At his first birthday he weighed around 12 lbs. When he was 13 months old, we moved from Fl to Tx. We had a WONDERFUL pediatrician that set us up with every doctor that we needed for him. We saw GI (didn't like them ), Pulmonology (LOVED), Cardiology, Nutrition, and Nephrology. His GI dr advised he didn't need to see him after a few visits so we found someone else much later. Kritter had cortical blindness, he could only see out of his eyes in certain spots. He was completely deaf. He loved being outside, he would laugh and laugh and his eyes would get all crazy from the sunlight! After

living in TX for just a few months, he began to gain weight and filled out! He began OT, ST, and PT. We had his cleft palate fixed and attempted oral stimulation but he never took it on. He flourished in Texas, going as far as not being admitted to the hospital for over a year! He did really well! He began to go to school, a PPCD program at an elementary school and he got to ride the bus which he loved! I got pregnant in 2009 with our first daughter Calleigh. I had low amniotic fluid and was put on bedrest about 2 weeks before her due date. The same day, Kritter stopped breathing. 7 times. The first time was during therapy. I had to give him CPR. Thinking it was an isolated event, I declined an ambulance ride to Children's. 30 minutes late, we were on our way as he did it again and again. He was discharged a few days later (it was from seizures). 2 days later it began again. He was admitted again. The day before I had Calleigh and still on "bedrest" he was discharged from the hospital. He also was at his heaviest weight, 42lbs! at the age of almost 5. He and Calleigh were so cute together! He rolled over onto her several times and she did the same! I have video of them "beating up" on each other. During the next year and half, he began to decline and he lost a lot of what little strength he had. He began to sleep a lot. On May 19th, the day after our 10th wedding anniversary, he passed away in his sleep. He had a slight cold so I got up with him in the middle of the night to give him a breathing treatment. We snuggled in his bed. Then I went to bed. When my husband got up a few hours later, he found him. It was very traumatic. We knew in the back of our minds that we could lose him any day and we always said when it was

time for God to call him home we would be ready, but still, in your heart of hearts you never want your child to go. I found out I was pregnant 3 days after he passed, then had a miscarriage a week later. Last year on Sept 13th, I had another little girl we named Gentry. She is very sweet like Kritterbug, very gentle and she smiles ALL the time, like he did. Calleigh remembers him a lot. We talk about him everyday. She thinks he paints the rainbows she sees. When ever she sees one, she always calls to me and says, "Look what my Bubba did! He paints the rainbows because they are beautiful and he wants me to see them!" Very wise for a four year old! My advice to any new parent, especially one with a Trisomy child? NEVER ever let a Dr. tell you your child doesn't have a chance. Even if there is a small one, its still a chance. Do I believe that God only gives you what you can handle? No, I believe God is what gets you through it. Having Kristopher is something I would do over again. I loved him. 

Leigh Anne and Kyle 

lalaleigh13@gmail.com 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Kevin David Beck Jr.

Kevin David Beck Jr. ~ Full Trisomy 13 ~ May 10th, 2012 

Our baby Kevin David Beck Jr had Full Trisomy 13.  He was born May 10th, 2012 and only lived about an hour and a half.  We are from Taylorsville Utah. I've attached a few pictures.  Also I blogged about our journey throughout the pregnancy which can be seen at http://www.kevinbeckyfam.blogspot.com/ .  Our story begins in January of 2012. Our Baby Kevin was too perfect for this life.  He was such a blessing to our family and continues to bless us from heaven.

Becky Beck

 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Adalyn May

Adalyn May ~ Full Trisomy 13 ~ Born Sleeping  September 18, 2012

As any new parents would be, we were so excited to go to our 12 week ultrasound. Everything was going so well until they brought in the doctor to explain some things. We were told the baby had swelling behind the neck, which could mean a few things. We said a few prayers, and were doing okay until we had an amniocentesis done at our 18 week ultrasound. That dreaded call came when we were told that our sweet baby girl had full trisomy 13. Everything spiraled downward from there, until we were able to pick ourselves up off the ground a little while later.

We decided that our sweet little girl was going to have a big impact on this world, and that we could touch others with her story. We started a blog and the remainder of the pregnancy we enjoyed each and every

precious moment we were given with our little girl. Every kick, punch, and hiccup will be cherished forever.

On September 18, Adalyn May came into the world. She had passed away a few days prior, so we knew what to expect the day of. We took lots of pictures and cherished every moment with her. Her story will forever live on, and she will forever be remembered and loved. We pray to have siblings for her to watch over from heaven on day.

Follow Adalyn’s family on her blog http://adalynmayourlittleangel.blogspot.com/

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Shayla D. Steans

Shayla D. Steans ~ Full Trisomy 13

October 20, 1998 ~ January 16, 2011

July 2013

The twelve years Shayla spent with us here on earth was truly a blessing. She deeply touched the hearts and spirits of countless doctors, nurses, teachers, family members and friends. She is missed, yet the love she brought us still remains. We saw the best in her, when many of doctors could only see the disorder in her. We will see her again....this is not the end!

July 2010

Shayla was born Oct. 20, 1998 in Atlanta, GA.  We were not given much hope from the doctor's that she would live as long as she has.  We were told that she may be stillborn or pass away soon after birth, but God had a different plan and she is now 11 years old! She has had multiple surgeries and now battles with aspiration pneumonia on occasion, but what a joy and a blessing she is to our family and to everyone that meets her.  When I first heard the words to a song by Luther Barnes and the Red Budd Choir-I'm still holding on, I knew she was going to be o.k.  The first verse of the song says, "They said I wouldn't make it, they said I wouldn't be here today, they said I would never amount to anything, but I'm glad to say that I'm on my way and I'm growing more, and more each day".  She proved them wrong and continues to do so!  Praise God for giving us such a special child and entrusting us with her care here on earth until He is ready to call her home to live with Him with a perfect glorified body in eternity.  I'm glad I found

this site that celebrates children born with this disorder.  There was nothing like this or any kind of support when Shayla was born and in this forum many more people will be able to witness what God can and will do!!  Blessings!

Roshelle Steans roshell1027@gmail.com

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

BACK TO TREASURE MEMORIES PAGE