The Mosaic Triploidy Family Conference

Mosaic Triploidy is an extremely rare chromosomal syndrome that affects each child differently. Through facebook, multiple families have been able to come together to offer support for one another. Our goal is to raise enough funds to allow these families to meet in person for the very first time. This would be the first time many of these children have had the opportunity to meet someone like them. The amount of information gained and support these families would gain from such an opportunity would be life changing. Please help our cause by purchasing a shirt to spread awareness and raise funds for The Mosaic Triploidy Family Conference.  You would be helping children like Rielynn meet their M.T. brothers and sisters!

Rielynn's Story

Rielynn was born July 16, 2008 at Deaconess Medical Center in Spokane, Washington.  He was delivered at 38 weeks gestation and had been induced because of IUGR (intrauterine growth restriction) and low amniotic fluid.  Rielynn entered the world at 9:00pm weighing 3lbs 4.12 oz and was 16 ½ in long.  He spent the first 6 weeks of life in NICU because of his low birth weight and failure to thrive.  He spent the majority of his time in an incubator underneath the bili lights.  Rielynn’s blood test did not indicate any problems, but it was apparent that something wasn’t typical.  Rielynn’s first surgery was for g-tube placement before leaving the hospital.   He began eating well at home and was able to have his g-tube removed; however the site did not close on its own so he underwent his fourth surgery.  Rielynn was also diagnosed with moderate/severe hearing loss and had bilateral tubes placed in December 2008.

It wasn’t until 9 months of age that Rielynn was diagnosed with Mosaic Triploidy via skin sampling.  It is estimated that there are approximately only 65 documented cases worldwide; rare doesn’t even begin to describe Rielynn’s journey.  He has been a fighter since the very beginning.  When the odds have been against him, he simply smiles and trudges forward.  Rielynn has not simply struggled through his diagnosis; he takes each task at its face value and proceeds on with grace far past his five years.  Just because something makes him different or is more difficult, has no impact on Rielynn’s unwavering determination to make the life he was given the life he was born to lead.  The amount of pride I have in my son is simply indescribable, knowing him has been one of the greatest privileges of my life.

In August 2009 Rielynn developed sties on both lids of his right eye, which he had to have surgically removed.  He underwent another surgery in December to have two of his fingers on his left hand separated.  Rielynn has congenital scoliosis and was casted in July 2011.  He had a 61.2 degree spinal curve which needed correction.  However, shortly after being casted he began having grand mal seizures and the cast was removed.  After consulting with a neurologist and many tests later, Rielynn was placed on anti-convulsants for life and has been seizure free since his initial episode.  Due to the timing of the seizures, it was decided that Rielynn would have a removable brace made for his scoliosis instead of wearing a cast.  Rielynn also underwent dental surgery in March 2012.  His most recent surgery has been a Frontalis Sling placement to correct his congenital ptosis.  Rielynn has been put under anesthesia close to 20 times in his five years.

Mosaic Triploidy can affect each child differently, but in general the symptoms impact all aspects of the child’s life.  Rielynn has moderate/severe hearing loss so he has tubes placed in both ears and wears bilateral hearing aids.  He suffers from speech apraxia so his verbal communication is quite limited.  However, one of his biggest accomplishments has been learning sign language, ASL.  It opened a world he didn’t know existed and we have been incredibly blessed that so many of his little friends enjoy learning to “talk with their hands” and incorporate themselves into Rielynn’s world.  Rielynn has to work much harder to do things that come naturally to other children his age, but he never complains and continues to preserver through all adversity.  Rielynn’s life is incredibly busy; he attends preschool, speech therapy, occupational therapy, physical therapy, numerous doctor appointments with many different specialists, and of course time spent just being a kid.

Rielynn is an inspiration to everyone he meets.  He’s a five year old boy with more heart than anyone can imagine.  He is the most loving, determined, and joyful person I’ve ever had the pleasure of meeting.  Rielynn embraces his uniqueness and his constant happiness brings that positivity out in others.  Rielynn’s story isn’t about pity or a cure; it’s about spreading awareness for an incredible group of children who rock an extra set of chromosomes with style.  Spreading awareness has become a personal goal for me not just because of Rielynn, but many of the other incredible families I’ve had the opportunity to meet via Facebook.  These children are true miracles and the world should know about their triumphs, struggles, and smiles.  These children have infectious personalities and touch the lives of everyone they come in contact with.  In an era that has become all about being unique, these children know what it’s all about.

To learn more about the syndrome please visit 
https://www.facebook.com/mosaictriploidyawareness 
or follow us on Twitter
@MosaicTriploidy