What is Kleestra Syndrome??

Introduction: Kleestra Syndrome is a rare genetic disorder where a tiny piece is missing one of the body’s 46 chromosomes. Its absence is known to cause major symptoms of the syndrome. It also carries many characteristic traits that most likely feature developmental delays, distinctive facial features, behavioral issues, learning disabilities or difficulties and hypotonia (low-muscle tone). Hypotonia causes a motor delay but most cases children walk independently by age 3. And most have moderate to severe intellectual disability with expressive speech delay or little speech development--nonverbal communication is possible.  Other common known features may include heart conditions, minor genital anomalies in males, sleep difficulties, slightly unusual hands; such as incurving fingers, possible kidney anomalies, and dental anomalies. Kleestra is also known to exhibit features of behavioral developments such as ADHD and/or Autism.

What causes Kleestra: Its said in most cases, both parents will have normal chromosomes. The chromosome break is then said to have occurred out of the blue. Most cases of Kleefstra syndrome are not inherited, however. The genetic change occurs most often as a random event during the formation of reproductive cells (eggs or sperm) or in early fetal development. Where both of the same parents have normal chromosomes, it is unlikely known that another child will be born with Kleefstra syndrome or any other chromosome disorder. However, it is highly recommended that both parents have a chromosome test, to possibly avoid bearing another child with any chromosome disorder(s).

Living with Kleefsta:  I have read that a child living with this rare genetic disorder is to have a well meant life, but just at a slower pace. Fortunately, the assistance, therapy and care received from doctors, therapists and support from family and friends make it easier to move forward.


For more information on Kleestra Syndrome, see links below.

http://kleefstrasyndrome.org/
http://www.rarechromo.org/information/Chromosome%20%209/Kleefstra%20Syndrome%20FTNW.pdf
 

 

 

 

 

Who is LANDON??

Ummm...where should I start??

Landon is a non-verbal 2 year old little silly, yet shy guy; who has a weird way of showing expressions. He's a goof-ball and full of laughter. He hates pictures but can sometimes be easily fooled for a smiling photo, however, recently he appears to enjoy having a photo taken only if the camera is reversed and he can see himself. Landon's favorite way of interacting is playing "clap-clap" and "row row row your boat". He doesn't show much interest in many kids his age, but he enjoys the company of his big sisters Anesia & Damari and his big cousins.

Landon has Hypotonia, Cerebellar Ataxia, he's G6PD Deficient, and was just diagnosed with a rare genetic condition called Kleefstra Syndrome; he also displays autistic traits. He will be going to a 2 day Autism Evaluation October 30th & 31st in Baltimore, MD, at The Kennedy Kriger Institute. In so many words, Landon may appear to look like a normal toddler with obvious developmental delays, but in reality he will require life long medical follow-ups for multiple issues.  

Currently, Landon attends Easter Seals Child Development Center in Washington, DC; a child care center who specializes in providing services for children with a variety developmental delays and /or special needs. He receives therapy services for Speech,Occupational and Physical Therapy. Landon also attends playgroups for families of infants & toddlers sponsored by the District of Columbia Early Intervention Strong Start Program.

I introduce you to LANDON.



Landon sitting in his new wagon, enjoying at day at the National Harbor.



Landon at school on the blacktop, having PT. He is strapped to a Gateway Trainer for walking assistance.

Update

Currently UNDER CONSTRUCTION!!!

.....stay tuned!

Intro

Why Blog??.... To educate and help other parents in my commnunity & siblings deal with accepting medical issues and/or developmental delays. Also to keep Landon's family and friends in touch with his world of progress, from doctors to doctors, choices & opinions, and to even continue educating ourselves, as his parents.

As the saying goes, "It Takes A Village To Raise A Child" - And this is OUR JOURNEY!

Welcome to Landon's Leap.