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Raising Darus

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Navigating the Waters of Phelan McDermid Syndrome

NAVIGATING THE WATERS OF PHELAN MCDERMID SYNDROME

Raising Darus

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  • Parent Shares
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Discover SPARK

February 2, 2018 Abby Lievense

If you or your child has autism, please consider joining SPARK! "Help us SPARK better futures for all individuals and families affected by autism."#strongertogether #phelanmcdermidsyndrome #shank3mutation #sfari#simonsfoundation #pmsf

Click here to see Darus on their website!

Darus Spark.png
← Sweet Sleepy BoyWomen's March 2018 →
  • May 2018
    • May 11, 2018 Front Tooth - There it was, Gone! May 11, 2018
    • May 7, 2018 Weekend Update May 7, 2018
  • April 2018
    • Apr 8, 2018 Riding a Bicycle Apr 8, 2018
    • Apr 7, 2018 Food Snacks Pretzels Apr 7, 2018
  • March 2018
    • Mar 20, 2018 Lamictal Mar 20, 2018
    • Mar 18, 2018 Inquisitive D Mar 18, 2018
  • February 2018
    • Feb 18, 2018 Sweet Sleepy Boy Feb 18, 2018
    • Feb 2, 2018 Discover SPARK Feb 2, 2018
  • January 2018
    • Jan 20, 2018 Women's March 2018 Jan 20, 2018
    • Jan 7, 2018 Hiking and then to Verizon Store Jan 7, 2018
    • Jan 3, 2018 Darus & Luana visit Universal Studios! Jan 3, 2018
  • December 2017
    • Dec 13, 2017 Donuts Interrupted Dec 13, 2017
  • September 2017
    • Sep 21, 2017 Physical Therapy Evaluation Sep 21, 2017
    • Sep 20, 2017 Books! Sep 20, 2017
    • Sep 10, 2017 Hiking Camp Josepho Sep 10, 2017
  • August 2017
    • Aug 29, 2017 Sleep Disturbances Aug 29, 2017
    • Aug 15, 2017 First Day of First Grade Aug 15, 2017
  • May 2017
    • May 27, 2017 "French Fries" May 27, 2017
  • April 2017
    • Apr 2, 2017 Joint Attention Apr 2, 2017
  • March 2017
    • Mar 6, 2017 Joining the PMSF Board of Directors Mar 6, 2017
  • February 2017
    • Feb 28, 2017 Parents want to give their autistic children a voice in schools, but scientists call their technique ‘false hope’ Feb 28, 2017
    • Feb 26, 2017 Say NO to House Bill 610 Feb 26, 2017
    • Feb 15, 2017 MRI of the Brain Feb 15, 2017
  • January 2017
    • Jan 6, 2017 Research Study at UT-Southwestern Jan 6, 2017
  • November 2016
    • Nov 20, 2016 Camp Josepho Hike Nov 20, 2016
    • Nov 18, 2016 Apple Boy Nov 18, 2016
    • Nov 5, 2016 Unlocking Knowledge Nov 5, 2016
    • Nov 3, 2016 Teaching Acceptance Nov 3, 2016
  • October 2016
    • Oct 1, 2016 Secrets of Being a Special Needs Parent Oct 1, 2016
  • September 2016
    • Sep 28, 2016 Clinical Trial at UT Southwestern - Biomarkers associated with Phelan-McDermid (22q13) Syndrome Sep 28, 2016
    • Sep 24, 2016 Global Genes Summit Sep 24, 2016
    • Sep 11, 2016 EEG Results Sep 11, 2016
    • Sep 9, 2016 2nd 24-Hour V-EEG Sep 9, 2016
    • Sep 8, 2016 2016 PMSF 24 Hour Giving Challenge Sep 8, 2016
    • Sep 3, 2016 Traveling Emily from the UK Sep 3, 2016
  • August 2016
    • Aug 22, 2016 Caroline's Cart Aug 22, 2016
    • Aug 18, 2016 "Momomom" Aug 18, 2016
    • Aug 16, 2016 First Day of Kindergarten Aug 16, 2016
    • Aug 10, 2016 Introducing our Kids to their Classmates Aug 10, 2016
  • June 2016
    • Jun 28, 2016 Project Believe by Karen Haberberg Jun 28, 2016
    • Jun 22, 2016 Pitt-Hopkins Syndrome Jun 22, 2016
    • Jun 20, 2016 Stanford Research Study Jun 20, 2016
  • May 2016
    • May 24, 2016 Grieving for a Child I haven't Lost May 24, 2016
    • May 23, 2016 Why Genetic Testing? Why Not?! May 23, 2016
  • April 2016
    • Apr 30, 2016 Garbage Trucks! Apr 30, 2016
    • Apr 26, 2016 Mountains instead of the Beach Apr 26, 2016
    • Apr 24, 2016 Basketball Darus Apr 24, 2016
    • Apr 23, 2016 Wuana's Car Apr 23, 2016
    • Apr 21, 2016 Potter the Kitty Apr 21, 2016
    • Apr 17, 2016 PMS Bites Apr 17, 2016
    • Apr 13, 2016 Body Sock Darus Apr 13, 2016
    • Apr 10, 2016 Cabrillo Marine Aquarium & Tide Pools Apr 10, 2016
  • March 2016
    • Mar 31, 2016 Fun with a Friend at the Redondo Pier Mar 31, 2016
    • Mar 20, 2016 Darus' Language Inventory Mar 20, 2016
    • Mar 17, 2016 Phelan Lucky Mar 17, 2016
  • February 2016
    • Feb 4, 2016 Swimming Lessons Feb 4, 2016
    • Feb 2, 2016 Music Therapy Feb 2, 2016
  • January 2016
    • Jan 12, 2016 Autism 'Reversed' ... in Mice Jan 12, 2016
  • December 2015
    • Dec 14, 2015 The Holiday Note I'd Like to Mail to Everyone on My List Dec 14, 2015
    • Dec 9, 2015 Ice Cream Boy Dec 9, 2015
    • Dec 2, 2015 Fatalities Confirmed in San Bernardino Shooting Dec 2, 2015
    • Dec 2, 2015 Mustard Boy Dec 2, 2015
  • November 2015
    • Nov 18, 2015 Living With a Rare Genetic Disorder - Bethesda Magazine Nov 18, 2015
    • Nov 16, 2015 Research Nov 16, 2015
    • Nov 10, 2015 Dear Teacher: Heartfelt Advice for Teachers from Students Nov 10, 2015
  • October 2015
    • Oct 27, 2015 Homeschooling Oct 27, 2015
  • September 2015
    • Sep 27, 2015 Hi from the Friendly Skies Sep 27, 2015
    • Sep 24, 2015 Laughing D Sep 24, 2015
    • Sep 20, 2015 Punker in the Bunker Sep 20, 2015
    • Sep 15, 2015 IEP Meeting Sep 15, 2015
    • Sep 6, 2015 Limit Tester Sep 6, 2015
  • August 2015
    • Aug 14, 2015 A Very Curious Punky Aug 14, 2015
    • Aug 10, 2015 Happy 5th Bday Aug 10, 2015
  • July 2015
    • Jul 26, 2015 Trip to the Midwest Jul 26, 2015
    • Jul 15, 2015 A Note from School Jul 15, 2015
    • Jul 13, 2015 Meeting w/ our New Geneticist Jul 13, 2015
    • Jul 3, 2015 Alternative Treatment & Therapies Jul 3, 2015
  • June 2015
    • Jun 28, 2015 A day at the pier... Jun 28, 2015
    • Jun 18, 2015 Neurology Appointment Jun 18, 2015
    • Jun 12, 2015 The Only Constant is Change Jun 12, 2015
    • Jun 12, 2015 Basketball Darus Jun 12, 2015
    • Jun 11, 2015 Option C Jun 11, 2015
  • May 2015
    • May 31, 2015 Fun at Coastline Beach May 31, 2015
    • May 24, 2015 Fun at the San Pedro Embarcadero May 24, 2015
    • May 24, 2015 Happiest Boy on the Block May 24, 2015
    • May 22, 2015 Visiting the Getty Center May 22, 2015
    • May 18, 2015 Saying good bye to a Classmate May 18, 2015
    • May 16, 2015 Darus had so much Fun! May 16, 2015
    • May 15, 2015 "Just Let Me Play with the Lids" May 15, 2015
    • May 14, 2015 Oxytocin sales into trials for Phelan McDermid Syndrome May 14, 2015
    • May 9, 2015 Business Cards May 9, 2015
    • May 2, 2015 Beach Day May 2, 2015
  • April 2015
    • Apr 25, 2015 Cabrillo Marine Aquarium - San Pedro - Point Fermin Apr 25, 2015
    • Apr 23, 2015 Boardwalk Games Apr 23, 2015
    • Apr 21, 2015 Fecal Smearing Apr 21, 2015
    • Apr 21, 2015 Internal Compass Apr 21, 2015
    • Apr 20, 2015 "I want cartoon!" Apr 20, 2015
    • Apr 10, 2015 Soccer Apr 10, 2015
    • Apr 7, 2015 It Takes a Village - Disneyland Apr 7, 2015
    • Apr 3, 2015 Psychiatrist Apr 3, 2015
    • Apr 3, 2015 Echocardiogram & EKG Apr 3, 2015
    • Apr 2, 2015 Neuro Ophthalmologist Apr 2, 2015
    • Apr 2, 2015 Lila Hilker Takes on Life with a Smile! Apr 2, 2015
    • Apr 1, 2015 Endocrinologist Apr 1, 2015
  • March 2015
    • Mar 31, 2015 Haircut - On His Own Accord Mar 31, 2015
    • Mar 26, 2015 Darus Loves the Bunny Mar 26, 2015
    • Mar 2, 2015 Emergency Room Line Jumpers are the Worst Mar 2, 2015
    • Mar 1, 2015 Phelan Lucky Mar 1, 2015
  • February 2015
    • Feb 17, 2015 Another Brave Post from The Mighty Feb 17, 2015
    • Feb 9, 2015 Genetic Doesn't Necessarily Mean Hereditary Feb 9, 2015
    • Feb 7, 2015 What did you do this morning? Feb 7, 2015
  • January 2015
    • Jan 30, 2015 Judging Eyes & Condescending Sighs Jan 30, 2015
  • December 2014
    • Dec 10, 2014 Medical Marijuana Dec 10, 2014
    • Dec 10, 2014 Things That Darus Loves Dec 10, 2014
    • Dec 10, 2014 Challenges at School Dec 10, 2014
  • November 2014
    • Nov 26, 2014 Giving Thanks Nov 26, 2014
  • October 2014
    • Oct 29, 2014 Whole Exome Sequencing Oct 29, 2014
    • Oct 22, 2014 Pro Au Pair Oct 22, 2014
    • Oct 18, 2014 24-Hour EEG Oct 18, 2014
    • Oct 17, 2014 Seaver Autism Center at Mount Sinai Medical School in NYC Oct 17, 2014
    • Oct 15, 2014 Hypotonia Oct 15, 2014
    • Oct 14, 2014 Receiving a Prenatal Downs Syndrome dx - What One Couple Did Oct 14, 2014
    • Oct 14, 2014 Could a Cure be on the Horizon? Oct 14, 2014
    • Oct 13, 2014 AAC Evaluation Oct 13, 2014
    • Oct 9, 2014 Nighttime Waking Oct 9, 2014
    • Oct 9, 2014 Pull-Ups Oct 9, 2014
    • Oct 8, 2014 Journal of Neurodevelopmental Disorders - Spotlight on P-MS Oct 8, 2014
    • Oct 8, 2014 Phelan-McD​ermid Syndrome part of the NIH-Funded Rare Diseases Consortium Oct 8, 2014
  • September 2014
    • Sep 30, 2014 Welcome to Holland Sep 30, 2014
    • Sep 29, 2014 The Day of the Diagnosis Sep 29, 2014

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