Print Friendly and PDF


Translate Website

What is 1p36 Deletion Syndrome?


1p36 Deletion Syndrome is a chromosome disorder that can be characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. Though many people have never heard of 1p36 Deletion Syndrome, it is the one of the most common chromosome deletions. Learn More


14 month old Caden has something to teach us all



My name is Caden. I was born July 9, 2009 in Batesville, Arkansas. At the age of four days I was flown to Arkansas Children’s Hospital. Where I would spend the next seven weeks of my life. While there my family discovered I was born with a very rare heart defect known as Left Ventricle Non-Compaction Cardiomyopathy and even rarer known 1P36 Deletion Syndrome. Because of this I suffer from seizures, infantile spasms, low muscle tone, possible hearing loss, and developmental delays. I spend time each day in physical, occupational, speech, and/or developmental therapy. I continue to make improvements each week and hopefully one day will be able to help find a cure for Left Ventricle Non-Compaction Cardiomyopathy and make doctors and others more aware of 1P36 Deletion Syndrome.

Hi, we are Caden’s parents, Bartley and Tammy. We are persuaded to make known and help find a cure and better treatment for Left Ventricle Non-Compaction Cardiomyopathy and 1P36 Deletion Syndrome that have affected Caden’s life. God has blessed us with 3 other healthy children; but has taught us the most through Caden and his life. Please take time to make yourself and others aware - before something strikes your family or friends!





Hooray!  We're up another 3 spots to #45.  
Only 10 days left to make it to the top 10! 
Every vote makes a difference and helps us get to the goal of $50K!
Each vote you make and each person you get to vote helps children & families affected by 1p36 Deletion Syndrome.
Remember to vote for us and for our Pepsi Refresh partners who are also helping us to win!
1. Pepsi Refresh Site - click on each cause to vote on their page.
2. With your Facebook Account
3. Text the numbers 101439 to 73774 (PEPSI) - your normal texting charges apply


Her mother's persistence got Sequoya the correct diagnosis.


"My sweet Sequoya was diagnosed with 1p36 deletion at the age of 3. Sequoya spent much of her first year in the hospital fighting for her life, under went open heart surgery at 6 months old, and was treated by many, many specialists and therapists throughout her young life. After years of searching for the cause of her heart condition and severe physical and developmental delays, I finally found what I had been looking for... a blog about 1p36 deletion, I researched this condition and asked her genetic doctor to do a blood test checking for this syndrome. Finally, Sequoya had a diagnosis and my family and I had a place to belong. The support, love, and information provided by other families affected by this syndrome has been invaluable to me. Awareness is key!"  
From Sequoya's mom Elisha.




We’re Climbing!

We’ve climbed 11 spots in less than a week to 48th place!  Keep up the good work.  We need to be in the top ten by the end of the month.  Thank  you everyone for voting and sharing with your friends and family.   Remember to vote three ways every day.   Every vote counts.  Every vote brings us closer to our goal.


Her Family's "Little Miracle"

Read Kaylee's story from her mom, Sherry:
"Kaylee's entrance into this world marked the commencement of a miraculous journey- a journey of challenges and obstacles, a journey of beauty, grace, and hope. She made her entrance with a small deletion on her 1st chromosome, and so began our family's walk with 1p36 deletion syndrome. Despite a small deletion on her 1st chromosome, Kaylee provided our family with multitude of blessings, trials, and lessons. Her small body arrived with feeding difficulties, acid reflux, infantile spasms a catastrophic seizure disorder, hearing loss, umbilical hernia, blocked tear duct, farsightedness in both eyes, and hospital stays at Driscoll Children's hopsital in Corpus Christi. As always, Kaylee flaunted her feisty spirit and persisted on to complete a two month duration of ACTH therapy a very strong sterioid injections. We are blessed to say Kaylee's seizures finally were brought under control with ACTH therapy, a drug that gave Kaylee the upper hand on epilepsy. But to limit Kaylee's existence and achievements to the confines of a genetic condition would be the ultimate disservice to our little fighter girl and our God. Kaylee is a testament of God's faithfulness and timing. Kaylee is a beacon of light in a shadowy world of hardship. She is an illustration of perfection in her innocence and resiliency. She is a representation of all that is good. She is a daughter and a sister who has been the guide for her family and their faith on a walk into the unknown. She is an expert teacher on living each day and each moment in the present. Though her strides thus far have already been numerous, she undoubtedly has much more to share with this world.

During this past year, our family has witnessed the most incredible outpouring of love and support from our family, friends, and complete strangers. More kindness and compassion and unselfishness, then we could have ever, ever imagined. I have, along the way, also met the most magical children and families that I would have never had the opportunity and the privilege of meeting had it not been for this journey. I have watched with immense joy and hope, the children and families who are accomplishing many wonderful milestones, some small or big, but equally awesome accomplishments. I have also watched with equal pain and sorrow, the faces of families whose children would not make it. A year ago I would never, in my wildest dreams, have imagined having to watch parents and siblings and loved ones, say goodbye and journey forward in this life, without their precious children. That part of the journey I will never be able to reconcile.
Each 1p36 child is so unique and each one of them have their own time frame of when they will reach their next milestone. A certain few of these children appear from the outside, to be flying through life and it's milestones, but many harbor within them, medical issues and impending obstacles, waiting for an opportune time to show their faces. Others fight everyday, every moment, just to be here with families who would move mountains to keep them here with them. One thing they all have in common is that they are all brave mighty fighters. Our children indeed teach us so much about life and how to be grateful for the "little" things. I am forever grateful for my Kaylee, "my little miracle".