Utah Kids - Kid of the Month

Deonna Rae Mayabb was born a healthy baby girl on April 21, 2004. She weighed 6 lbs. 7 oz. and was 19 ½ in. long. From birth to 9 months she did not meet many of her milestones and by her 1st birthday, she was not crawling and the few words she had were all but lost. Deonna started to crawl at 13 months and at 16 months started receiving early intervention to see if we could get her to meet some of the milestones. We had been seeing neurologists and the doctor’s kept telling me that the test results were showing there was no seizure activity. Also in October of 2005 Deonna was given a diagnosis of Autism. It wasn’t until December of 2005 where she took her first steps, just 2 weeks after having tubes placed in her ears. That was a wonderful Christmas present from Deonna to us.

2006 brought Deonna the whole new world of walking and climbing around the house on her dresser and her bed, where early intervention played a major role. Deonna endured 2 eye-muscle surgeries in that calendar year. One of Deonna’s favorite activities was to climb out of bed, open her dresser drawers, climb up to her t.v., and proceed to turn her t.v. on as loud as it would go and turn it to the Spanish channel no matter what channel we had left it on at 2:00 a.m. and proceed to fall asleep on her floor. This happened countless times . As 2007 rolled in Deonna was cruising the house and exploring like any toddler about the same age. In California at the age of 3, she had graduated the early intervention program and began preschool.

Following her short 3 months in a preschool setting her and her family moved to Ogden, Utah. Her life in turmoil and on life support on the 18th of October 2007. She began having grand mal seizures and no doctors could explain why they were happening. For days I did not see my baby girl open her eyes fearing that this would be the last time I would get to see her, due to the fact that every time Primary Children’s Medical Center PICU tried taking her off life support she would not breathe on her own. At this point in my life, this by far had been the hardest thing I would have ever had to gone through. When Deonna finally started to come around on her own days later the doctors tried many different medications all of which changed her tremendously. After this episode, the curious, wandering, adventurous little girl was gone , and for months we fought balances of medications and seizures to bring the little girl back.

Sometime in the Spring of 2008 when medications were lessened and small seizures were allowed to occur, Deonna started to express a whole new appearance. The wandering and adventurous girl never returned, however a smile and eyes that talked that could melt any frozen heart emerged. Deonna developed a new personality in which her laughter and smiles brightened even her darkest days. The start of a new school year brought her into the Northern Utah Autism Program (NUAP), followed again by an October bought of hospital stays because of major seizures.

The end of 2008 through 2009 Deonna fought through all of her seizures with a smile that only could be described as heaven sent. Deonna would see another eye surgery, a placement of a vagal nerve stimulator (VNS), a tonsillectomy and adenoidectomy, a placement of a G-tube, with countless EEG’s and sleep studies, along with one more stint on life support through the end of 2010. She got a diagnosis change in February 2011 of Rett Syndrome. With hindsight being 20/20 and with the research being vigorously pursued within the following weeks, Deonna’s diagnosis was relatively easy to trace a backwards timeline that met all expectations of our Rett children. Deonna has endured countless tests over the past 4 years since her Rett diagnosis. Numerous hospital stays, 3 visits to the Bluebird Rett Center at Texas Children’s Hospital, 1 visit to Colorado Children’s Hospital, and she has done all these as the happiest little girl you will ever meet. Always smiling, always laughing, and always trying to tell you something with her eyes. Deonna has never let her Autism or Rett diagnosis slow her down. She was the guest of the year at Wolf Mountain Ski Resort 2010-2011 in which her dad built her a custom sled so that she could enjoy snowboarding with the family. Deonna has been a season ticket holder for the Utah Grizzlies for the past 3 years. She loves being on the ice in her wheelchair and getting all the attention from all the players. This past summer she was able to enjoy bicycling with her family as her dad custom built a towable trailer for her wheelchair. This brought her great laughter and tons of smiles. Deonna is about to embark on a new family activity this year in her newly customized motorcycle sidecar. Deonna will turn 11 this month (April) and she has endured more that we could ever imagine all while being one of the happiest kids we have ever seen. If you ever have the chance to meet Deonna, please stop and say hi, because no matter how bad your day has been she will brighten it.

Meet Kellie - our Fundraising / Volunteering Coordinator

From a young age always Kellie always wanted a SN child, she has been blessed with 4 (though all low key). Kellie graduated from Ricks College (BYU-I), in Communication and then from University of Utah in Public Communication, learning how to work for a cause and help others to work with her. She met her husband, Brandon Simmons, while at the University of Utah and they got married in 2001. They are now registered foster parents, and reside in Southern Salt Lake County.

Kellie has worked extensively with the PTA, and has loved being of service to her community. She has served as a Public Relations VP, Secretary, and committee chairs-overseeing various weekly events, planned various fundraisers and served as President. She has helped her community embrace their PTA and volunteer where they can. She is always finding new ways people can help in their own capacity. Kellie also teaches creative modern dance. She loves to help children find their inner magic through dance and believes anyone can dance. To Kellie, dance is a magical and personal experience, where she feels most connected to her soul. Kellie loves to be hard at work helping anywhere she can; apparently she's afraid of boredom.

Kellie’s oldest child has severe Amblyopia and is nearly blind in one eye; she also has severe allergies to Wheat, Gluten, peanuts, tree nuts, and most fruits and veggies. Food is a constant challenge and problem at her house. Kellie’s second child has ADHD/ADD. Her third child was born 1 month early and has Asthma and mild CP on her right side. Kellie’s forth child was adopted through foster care, she was born at 25 weeks, she was 1lb 10oz. And has several diagnosis too long to explain, but is a miracle child who is in the process of defying all her odds, but will still struggle through life.

In what spare time the family has, we love to hike, explore, camp, visit museums, parks and go to intersting places, we just like to be together. I’m also supposed to list my hobbies, but I say “Hobbies – who has time?” If I did have time and money for hobbies I would play the cello, paint, be a Yoga and Pilates master, snow ski, water ski (I love water skiing), and one day I want to paraglide.

Tuesday: (Vent Tuesday) "The hardest thing I've had to do as a Special Needs Parent..."

So doctors and therapist’s always say that kids develop at a certain pace and then their is my Ella and Faith, their developmental gap gets wider and wider. I hate that. I don’t generally think about it, to me they are perfect and normal, until I notice the gap. Then it hurts. Like taking Faith to a birthday party, seeing the difference hurts so bad. So I teach modern, creative dance and yes I believe everyone can dance, however it is so hard for me to teach Ella. I try to avoid it as much as possible, but every so many years I teach her class, and it hurts. The other dancers don’t even notice really (well when they were younger they did sometimes, but not usually) but her arm and the way she hold it and such, it hurts inside when I see her dance. She loves to dance and I attribute how well her arm and leg works to dance, and she is so happy when she dances, and she talks about wanting be a dancer like her mommy, but…ya… it won’t happen. It hurts. She wants to play the violin, but her hand doesn’t have the strength to hold a bow, so ya, I avoid putting her in lessons. With Abbey, we didn’t know she was blind in one eye until she was 8, I know dumb mom right. We used to yell and yell at her to not run into the fence while riding a bike. We didn’t know she couldn’t see the fence. It hurts.

So being a SN mom is fabulous, but I hurt inside for so many different reasons, that is the hardest part.

Wednesday: 10 little known/interesting facts about you...and your greatest accomplishments, your family/kids' accomplishments, etc. for "Woot Wednesday".

1. I lie about my height. My driver’s license says 5’, but I’m shorter than that.
2. I’ve been to Israel.
3. One of my nick names is Might Mite, given to me by a lady I taught while serving a mission for the LDS church. I am crazy short but mighty in every way (so she said).
4. I love houses. While growing up my dad and mom were appraisers and my dad was also a realtor. So we used to go and look at houses inside and out for our Sunday activity.
5. I used to be able to name all the countries in Africa without looking.
6. I grew up with a learning disability, but have mostly outgrown or learned to cope.
7. All those dumb quizzes on FB we take like “What storm are you” or “What Disney character are you” or “what color are you” always come out to say I am someone/thing Fierce. That word is actually used every time. I don’t want to be fierce, I’d like to think I am nice, but apparently I am Fierce.
8. 90% of my wardrobe comes from my sister’s closet. Hand –me-downs from a few years go. But at least I have clothes I guess, and my sister is quite stylish.
9. I have water–skiied on top of a pyramid.
10. I don’t like shoes.

Greatest accomplishments are: mother of 4 daughters, and all of their accomplishments. Serving a mission for the LDS church. Figuring out my daughter Lynaea's metacognition deficit. Lynaea getting a 94% on her math test after I figured out her metacognition issue, that is huge! Abbey won her district debate competion and the school spellin be in the same week, and being on the honor roll. Ella learning to type (a bit) with her CP hand stuff, that was big. Faith learning to walk. My husband and I made it through law school (its a team effort). Being PTA President.

Thursday: Post from spouse, as part of it, they could include why they are thankful for you, for "Thankful Thursday".

I am thankful for Kellie because she never gives up. When confronted with obstacles, lack of support, or long odds, she just keeps pushing forward until she succeeds. I am also grateful that she has a great sense of humor, and loves to laugh. It certainly doesn't hurt that she's beautiful too.

Friday: 7 of your favorite photos for "Foto Friday".

Learn how the Epilepsy Association of Utah can help your family

Every month, somewhere in the middle, we will be spotlighting other Non Profits in Utah that impact our community.  We will alternate months with learning about some of the disorders we are supporting in Utah Kids.  This month, please take a moment to get to know the Epilepsy Association of Utah.

The Epilepsy Association of Utah is a 501(c)(3) nonprofit organization whose mission is to provide support services for people living with epilepsy, educate the community about epilepsy and assist in raising funds for research.

Since 1973, The Association has worked tirelessly to enhance communication with the community, assuring people living with epilepsy no longer have to live in fear that: their seizures will be joked about, they will be discriminated against and/or they are the only ones with the condition. Anywhere from 30,000 - 100,000 people in Utah have a diagnosis of epilepsy and, it is estimated, this number will increase significantly as the population ages.

Epilepsy is, simply put, an electrical disruption in the brain. 1 in 10 people will have a seizure in their lifetime and 1 in 26 will be officially diagnosed with epilepsy. It is the fourth most common neurological condition behind Alzheimer’s, Migraine and Stroke. Its prevalence is greater than cerebral palsy, multiple sclerosis and Parkinson’s disease combined. The earliest recorded mention of epilepsy dates back to 1067 BC to a Babylonian tablet of medicine housed in the British Museum. It is a condition as old as man himself.

The Association holds several fundraisers, an educational conference, support groups, a camp for teens with epilepsy, Seizure Smart complimentary training, and many other events to help raise awareness throughout the year.  This year we are also pleased to be a part of LoveUt GiveUt: http://loveutgiveut.razoo.com/story/Epilepsyutah

In celebration of International Epilepsy Awareness Day on March 26th, the Association is throwing a bubble party on the steps of the Utah State Capitol building from 6:30pm to 8:30pm. Can't join us for the party? Maybe you can find the time to party with us some other time throughout the year. Follow us on Facebook to keep track of all our shenganigans:    https://www.facebook.com/EpilepsyUtah

Online fundraising for EPILEPSY ASSOCIATION OF UTAH at Razoo

Meet Karen - our Cache Valley Parent Advocate

My name is Karen Cox and I live in Paradise, Utah. My husband and I met 31 years ago while we were attending Utah State University. We are the proud parents of 4 children, and also have the most amazing 6 grandchildren. 
Our son Ben is 26 and has Opitz C Syndrome and Asperger Syndrome. Having a child with a rare syndrome has taught us many things, advocacy, faith, patience, and lots and lots of unconditional love. Ben’s symptoms have calmed down somewhat with age but he still struggles with being deaf/blind, being a room walker, low stamina, more ear infections and surgeries than I can count, headaches, and every bug that even thinks about going through his day program.
I have served in Cache Valley and in the state as a parent representative on various advisory committee’s and boards. I have co-taught at Utah State University as a parent representative in special education classes, and worked as a parent consult for USU. My goal is to help people who work with and future teachers of children with special needs to take care, not only with the child but also the family. To listen and learn from the families, to help them realize the family is the greatest advocate and teacher regarding their child. I also want to help families who have children with special needs get the services and attention they need. When Ben was about 3 I decided if I could help just one family learn something the easy way, instead of how we learned it the hard way, it would be a very good thing.
In my spare time I work with the Early Intervention Program, listen to lots of music, read lots of books, spoil my family, and follow bicycle riders on crazy long bike rides.
My favorite quote is from my physical therapist, “Never Give In!”

I think the hardest thing I have ever had to do as a parent of a child with special needs is to accept hearing "I don't know" from doctors.  With time, I have come to respect that statement.  At first, every doctor appointment I wanted them to fix him, to make him better, to take away his pain and ours.  At the time of Ben's birth, there were only 14 other children in the world diagnosed with Opitz C Syndrome, and frankly, the doctors just really did not know what to do with him.  So we learned together.  We read everything we could find, and simply did the best we could with the unknown.  We are still trying to do our best, and doctors still tell us they don't know.  He has a great team in place. I trust them.  I question them.  We negotiate.  My heart still breaks at all the blood draws, the illnesses, the hospitalizations and repeated surgeries, even his headaches and all of his other challenges.  I keep thinking at least one thing should be easy for him and decided that is his capacity to love.

Ten Little Known Facts about Me:

1) I am a farmer's daughter and still love to play in the dirt.  It is my therapy!

2) I have been downhill out of control on a motorcycle, a 3 wheeler, and in a van.  The van definitely hurt the worst!

3) I love to ride in my car with the windows all down, blasting my music!  It is a perk of having a child who is legally deaf and loves music as much as I do.

4) I am addicted to Grey's Anatomy.  Netflix definitely feeds my addiction!

5) I love Hershey's chocolate mint kisses!  I feel strongly they should make them year round and not only at Christmas.

6) I also hide chocolate all over my house.  It's kind of fun when I find some.  The challenge is to hide it good enough that no one else finds it!

7) I have to make deals with my granddaughters to get me to exercise.  (If I exercise for the next 9 days, I get cookies!)

8) Ben and I enjoy supporting our family of cyclists.  Ben and I follow them in the car with all of the water and food.  Ben thinks he is riding too, so it works.  We have probably followed them 10,000ish miles.

9) I love to travel!

10) My family thinks I am crazy!  I am ok with it.  It keeps them on their toes.

We will update later this week with family photos and a little from my husband.

Meet Nadine - our Utah Kids Events Calendar Coordinator!

Hello! My name is Nadine Stoliby Braxton. I am the events coordinator for the Utah Kids Foundation. My job is to keep the events calendar updated. I receive the emails with the events for the Utah Kids Foundation and post them to the events calendar on the website. I also post them in the facebook group page.

 I was a military child, born in Indiana but moved around a lot. I spent a lot of my adult life in Mississippi and Texas. My grandfather was a full blood Choctaw from the Choctaw Nation of Oklahoma. My daughter Jessi, grandson Dakota and I are tribal members of the Choctaw Nation of Oklahoma. They both were born in Mississippi and moved in with me when I lived in Texas when Dakota was 6 months old. It's been a whirlwind since then to say the least!

 We moved to Utah when I lost my job in Texas and got rehired by the same company in Utah. I have been in the printing business for over 30 years. My daughter works not far from me at Discover. Dakota is 8 and in the third grade at Holbrook Elementary in Bountiful, where we live. My mother came up from Arizona and moved in with us, so we have 4 generations in our household.

 Dakota is the man of my life! He amazes me, he is my number one hero. He was diagnosed with high functioning Autism, Oppositional Defiance Disorder and Attention Deficit Hyperactivity Disorder at the age of five, after 2 years of not knowing what was wrong with him and fighting for months trying to find out. In 2013 he also started having seizures at night and just recently was diagnosed with some anxiety issues. I am his biggest advocate. I do not mind going up to his school and having large conversations about his IEP and whether or not it is being followed 100%, which most of the time it isn't. Everyone at the school knows who I am and who belongs to me.

 Dakota is probably what I would call my main hobby, he takes up most of my time, but I love rodeo and pow wows! Weird mix, I know, but that's just me. I love the western world, and my Indian blood runs wild at pow wows. My Mom is from Louisiana and we love Cajun food, but I got to have some Indian Fry bread whenever I can! I love the mountains, small towns and road trips. I can ride around all day just looking at the countryside, beautiful scenery and everything a small town has to offer. Dakota loves to swim and Great Wolf Lodge is our favorite place to go, so we save up every year to go.

 My favorite quote is "Don't let small minds convince you that your Dreams are too Big".

However, there is a Native American Prayer that I cannot leave out.

"May the Warm Winds of Heaven
Blow softly upon your house.
May the Great Spirit
Bless all who enter there.
May your Mocassins
Make happy tracks
in many snows,
and may the Rainbow
Always touch your shoulder."

 The hardest thing I've had to do as a Special Needs Grandparent is to watch my grandson, Dakota, try so  hard to fit in. He has such a hard time at school. Sometimes I feel like we are making him suffer by making him go to school everyday. He has very few friends, which breaks my heart. I just want to be with him all day to protect him from getting his feelings hurt. He is so smart, so bright and so fun to be with when he is in the right environment. When he was in kindergarten, the principal refused to have him tested. He wanted to go to school so bad, but his days were so terrible that I hated dropping him off everyday. I would cry when I dropped him off because he spent so much time in detention. And I knew what a great kid he really was!

 I just pray that some day he will understand how to navigate in this world. It's so heartbreaking to see any child with health issues.

10 Little known facts about me.

1. Since a very early age I have always wanted to be a Cowboy!

2. Once I rode in the opening ceremony at the Dixie Nationals Rodeo.

3. I once owned a horse that kicked me in the chin and busted it open, and once he stopped so suddenly that he threw me and I landed upside down hanging on a barbed wire fence.

4. I could eat Mudbugs (boiled crawfish) until I get sick!

5. I can cook Gumbo!

6. I would rather live in the country!

7. I love country music.

8. My greatest accomplishment is helping to raise a sweet, loving, awesome boy!

9. I'm super proud of Dakota just for surviving everyday.

10. I am honored to be a part of the Utah Kids Foundation.

I am so thankful to all the advocates that have tried so hard to help Dakota. He has an awesome 3rd grade teacher, I couldn't ask for better, and our resource teacher is so attentive it's unbelievable. We have had a lot of help from Davis Behavioral Health, our pediatrician is extra awesome, and so is our OT. I'm very thankful that this awesome little boy has came into our lives. He has taught me many things in life. I'm also very thankful that I joined the Utah Kids foundation. I was pointed to the facebook page by friend.

Hello. My name is Jessica. I am so thankful for my mom Nadine Braxton. She is the most dependable person I know. Nadine always takes my son Dakota to his therapy and dr appointments and plans awesome vacations that the whole family can enjoy. She also stands her ground with Dakota's school to get him the assistance he needs. She is not just a great mom but also an excellent Gammy!

Meet Brandee Garvoille - our Autism and Insurance Guru

Hello, my name is Brandee Garvoille, and I am the Autism and Insurance Consultant for the Utah Kids Foundation!  I was born and raised in West Valley City, and the furthest I would move away from home was 11.3 miles to West Jordan!  I’m an only child, and a total Mama’s Girl (and my kids are pretty much Grandma Trace’s whole world)! J

At 19, I started working for SelectHealth (which was then IHC Health Plans), the six years that I was there, I worked as a claims processor/member services, enrollment processor, and customer service coordinator for both small group, and individual sales.  While working there, I also became a certified medical coder.  I learned all the ins and outs of the insurance carrier side of things, and then was recruited to work for an agent at his agency, The Insurance Exchange.  In 2006 I became a licensed Health/Life Insurance Producer.  I am now the Vice President of Operations, and run the entire agency; also, I sell, and have my own book of business.  The knowledge that I gained while working at SelectHealth has become invaluable in my role as an insurance agent, a special needs parent, and as a member of the Utah Kids Board.

6 months after I started working for IHC, I married the love of my life, and my best friend, Andrew Garvoille.  We wanted to start a family, but the babies never came.  After several miscarriages, we decided to become licensed foster parents.  In February of 2003, 3 year old Carter came to live with us; he has been diagnosed with Asperger’s, Fetal Alcohol Syndrome, ADHD, PTSD, and Reactive Attachment Disorder.  In May of 2004, we were able to adopt him!  He is 15 years old now, and is SUPER smart (almost too smart for his own good)!  He loves video games, LEGOS, and anything he can take apart, and put back together. 

In September of 2004, at just 4 weeks old, KayCee came to live with us (we were able to adopt her in July of 2005), at that time she was diagnosed with Failure to Thrive, and only weighed 7 pounds; she is now a rambunctious 10 year old chatter box, that never stops moving!  She has been diagnosed with Autism Spectrum Disorder, Fetal Alcohol Syndrome, and ADHD.  She loves to play with her friends, anything Sophia the First, or Curious George, and tormenting her big brother!

My kids are my biggest test, and my biggest reward!  I don’t know why my babies had to take the road they did to come to us, but they were definitely meant to be part of our family!  My family is complete, and I wouldn’t trade any of it, even the hard days, for anything in the world!

The hardest thing I've had to do as a Special Needs Parent, is work full-time; run an entire insurance agency by myself, and juggle appointments, therapies, IEP meetings, homework, emergencies, etc. The hardest days of all are when one of my kiddos wakes up and says, "Mommy, do you HAVE to go to work today?! I wish you could just stay home with me!" Those are the days I don't wear any makeup, and I bawl the entire way to work!! The other thing that breaks my heart is watching my kids struggle with their peers; not being invited to birthday parties (for some reason, this breaks my daughter's heart more than anything!), the bullying, watching my son play himself, and tell me he doesn't have any friends. I wish everyone could see how amazing my kids are! Our life may be hard, but I wouldn't trade it for anything! Just this past weekend, my mom took Carter, KayCee, and I to Disney on Ice; when I saw the look of pure joy and amazement, on the faces of my 15 year-old son, and almost 11 year-old daughter, I leaned over to my mom and said, "I'm grateful for their special needs. They are so innocent, and find so much joy in the world; it keeps them young!"

I’m so excited to be on the Utah Kids board and work with such amazing people, and be support for all of the amazing special needs families in Utah! Feel free to contact me, if you ever need help with anything!!

My favorite quote is, “When God leads you to the edge of a cliff, trust him fully. Only two things can happen; either he will catch you when you fall, or he will teach you how to fly.”

10 little known/interesting facts about me..

1) I won a beautiful baby contest!

2) As a Senior in high school, I was awarded, "Sterling Scholar of Family and Consumer Science".

3)  I'm an only child. My father was killed in an industrial accident when my mom was eight-and-a-half months pregnant with me. She remarried when I was 5, and my step-dad legally adopted me when I was 8; they were never able to have any more children.

4) Both of my children were adopted from the Foster care system. My son's biological grandfather is a very infamous man, and died in prison. I still wonder if I should ever tell him the whole truth!

5) My aunt, and I, married brothers; they've since divorced, but for a few years, my aunt was, also, my sister-in-law, and my husband's brother was his uncle; their kids are my cousins, and my nieces and nephews.

6) I met my husband when I went on a blind-date with my aunt and the brother's best friend. (The best friend ended up marrying Drew's sister...LOL...they also divorced, so out of the three marriages that happened in one year of each other, we are the only ones who've made it! Our 15th wedding anniversary is on April 21st!!)

7) I am a die-hard University of Utah fan!! My daughter is 1/4 Ute Indian, and was a U fan, until her teacher, and my mom, brainwashed her into becoming a BYU fan!!

8)  I LOVE NASCAR!! My dad used to race, for his first Father's Day, we gave him a barrel of racing fuel! He used to work for a company that built engine parts for NASCAR; I've met several drivers, and been in their million dollar motor homes!! I love Dale Earnhardt, Jr., and my husband even looks like him!!

9) My dad has a rare form of Muscular Dystrophy called Pompe Disease, there are only 7 people in Utah that have it! At Rare Disease Day, I had the pleasure of meeting 4 of those amazing people! On March 21st, my family is walking in the MDA walk, and our team (Parading for Pompe) has already raised almost $2,000!!

10)  Syndi Knowlton and I could seriously be long lost sisters, we have SO MUCH in common, including our own medical issues! Being apart of Utah Kids has been the most amazing and rewarding experience for me!! I can't wait to head up the committee for the Empty Stocking Fund this year!!

This handsome boy is Konner - our March Kid of the Month!

Konner is a 5 year old little boy who is full of spark and life.  He doesn't let anything stop him or get in his way.  He doesn't find his disability to be a blockage in the road but a journey of life.  He has gone through 4 years of being poked and prodded by doctors to get a diagnosis.  May 1, 2014, we  found out Konner has a rare condition called Hereditary Spastic Paraplegia SPG4 mutation.  It is the most common form of HSP but Konner's is considered complicated due to him having partial complex seizures, sensory processing disorder which might also be related to his condition, and possibly Aspberger's.  This condition is usually found in adults and is not commonly found in children or children have been misdiagnosed with Cerebral Palsy that do have this condition.  He has been in a wheelchair for 2 1/2 years and just received his first powerchair in January due to his condition progressing.  We moved here to Utah 2 1/2 years ago from Wyoming in order to be closer to the doctors at Primary's as we were traveling here so much.  Since moving here, our appointments have been spread out and now that we have a diagnosis, we don't need to see as many doctors.  They aren't certain how to help him with this progress.   We will be seeing an HSP specialist in October at the Scottish Rite of Dallas because of how complex Konner is , a lot of doctors have referred to this doctor for answers and to enroll Konner in a study.

His favorite activities are the movies and horseback riding in Layton.  He received a Make A Wish trip in January to go to Disney World to meet Mickey.  His dream job would be a fireman like his second cousin, who is his hero!  This journey we have been on the last 5 years has been a trialing journey but one of the best as well.  Thorough Konner we have learned patience and understanding.  We have also grown closer to God to help us through this journey and bring us the answers to help Konner .  For more information on Konner's journey and store, follow him on Facebook.

Meet Nikki Nelson -Southern Utah Parent Advocate

Hi my name is Nikki Nelson. I currently serve on the Utah Kids board as the Southern Utah Parent Advocate. I have been a resident of Washington County since 1990.  I have been married to my amazing husband, Andrew, for almost 17 years; we have 3 children, all boys. Our oldest will be 15 years old this month and is in the 9th grade.  We also have identical twin boys age 7 and in the first grade.

I am currently a stay at home mom, with a small professional photography business on the side. I have a Bachelors of Science in Business Administration.  I worked in the HR field for 7 years before deciding to stay at home.  During college I served on the Student Executive Council as the Organizations President working with the Clubs on campus organizing and helping clubs complete service projects throughout the community. I also served as a VISTA (Volunteers In Service To America) Volunteer for Dixie State College, once again over service on campus, organizing groups as well as individual service projects for students within the community. This also included teaching a service class once a week that a student could earn one credit from.     

The twins were born 11 weeks before they were due.  They suffered from twin to twin transfusion causing them to come early.  This caused great stress to them being born at only 29 weeks.  One twin had mild problems and has come around to being “typical” today.  The other twin suffered more serious trauma at birth and was also the donor in the twin to twin transfusion.  At about 12 months he was diagnosed with Cerebral Palsy (CP).  He currently uses a wheel chair for all transportation however he does love to play on the ground with his cars.  Slowly he is learning to talk and communicate, but he does understand very well.  He eats regular food and he loves to eat, he LOVES to laugh, play with his brothers, listen to music, go for car rides, shop, ride the bus, swim, and just have a great time.  

Having a child with special needs has introduced me to a whole new world.  It has given me great opportunities to meet amazing people.  It has also given me some of my greatest blessings in life.  It is the hardest thing I have ever done, but truly the most rewarding!  

I know how important a support group is to me.  Sometimes there is a very “alone” feeling being a parent of a special needs child, but a support system is crucial to help dissipate that feeling.  Somehow the word needs to get out there that support systems do exist and that there are so many resources available.  I love volunteering and serving the community. I am so honored to get to be a part of Utah Kids and have the friendships that I have gained from it.

My favorite quote is:

Do not go where the path may lead, go instead where there is no path and leave a trail.

Or this one

God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family. -- Author Unknown

The hardest thing I’ve had to do as a Special Needs Parent is watching my 1 week old baby be taken away in the Life Flight incubator to go to Primary Children’s for life saving bowel surgery. Then again at age 4 months, same thing. Or it could possibly be the skull surgery we chose to do knowing it was risky, but that he needed it to fix the shape of his head for growth in the future. Maybe it’s holding him as he cries while they put him to sleep so he can have injections in his legs so he isn’t so stiff. Then again this last summer when he had to have a right hip reconstruction, femur reduction, and adductor release surgery and then spent 6 weeks in a body cast was all pretty hard too. I guess the theme here for me is that surgeries SUCK and it’s very hard for me to send my little buddy  to be put to sleep so when he wakes up he doesn’t know what’s going on and no matter how hard I try to explain it to him before hand he just doesn’t understand. Yes, these things are hard, but I’m not gonna lie, being a Special Needs parent is also very rewarding  and truly has taught me the greatest gift of all, Unconditional Love, because even though surgeries are hard he still LOVES me when it’s all over.

10 Little Known or Interesting Facts About Me

1. In December 2013 my husband won a Facebook contest to have Lasik surgery for himself or a friend, he gave it to me. Best gift ever!
2. I have a sunflower tattoo on my right leg.
3. I’ve had melanoma cancer on my right arm and had to have a chunk of my arm taken out as well as lymph nodes in my arm pit. Because of that surgery I can’t feel anything on my right arm from just below the elbow all the way to my fingertips.
4. I met my husband on a blind date that we both had cancelled several times before finally caving in and going on it.
5. I’m terrified of Heights. I shake and start to hyperventilate when I’m put in that situation.
6. Every year I set a goal to read 10,000 pages in one year. I did it once in 2010, but barely, 27 books for a total of 10,015 pages.
7. I took a class in college twice because I didn’t get an A. I got a B+ and that wasn’t good enough.
8. If it’s from the sea I DO NOT eat it. I also HATE olives, not that they have anything to do with each other, but I dislike both a lot. But I do LOVE Diet Coke and can be found drinking one from sun up to sun down.
9. My car caught on fire one time when I was driving home from Salt Lake with a friend.
10. When I was younger I wanted to move to New York and work in a high rise.