Sophia’s “Kicking CASK and Taking Names” Event in Edgewater Park, NJ, March 19th

March 15, 2016

The EventSophia CASK 2
 Hundreds of teams from all over the world participated in the  2016 Denim Dash Virtual 5K by Global Genes. The top earning team, by a wide margin, is Team Sophia’s Kicking CASK and Taking Names.  The team has raised an outstanding $12,240 in a very short period of time.  Their 5k Run/Walk was held on March 19th, 2016 at Woodlake Park (York and LaFayette Road) in Edwater Park, NJ, 08010.  It was an incredible success with friends and family all coming out to support Sophia.  Sophia was able to participate and join in on the fun with the help of her mom Angela and her upsee which allows her to walk with assistance.  She completed the race breaking through the finish line with everyone who came out to support her cheering her on!
In a statement on the event, the family said:

“We did not know any other families that have a child with CASK until the process of getting this event together,” said Sophia’s father, Matt Sweeney. “Angela (my wife) found your event one day while doing her morning “stalking” on Facebook. It was extremely short notice, but we had been looking for an event we could participate in to show our support to families that were going through similar struggles.”

“When we came across this we decided that we should try and organize some kind of walk in honor of Sophia. We had no idea how big this event would become in such a short period of time,” said Matt. “This will be our first event, but we have hopes of growing it every year and making this an annual event. We cannot believe that we have raised over $7,000 in just two weeks time (as of 4/4/2016 $12,240 has been raised).  We held this event March 19th (19 days after finding it on Facebook) and we are expecting at least 100 people (if not more) to come out and walk or run with us.  We don’t have anything crazy planned. We will be walking around a dog/walking park 6 times. Sophia has a upsee which is manufactured by Firefly, with our help it allows her to walk. She is strapped to us and this will allow her to walkthrough the finish line at the end of the event.”
Sophia CASK 5

  Sophia’s Story
Sophia was born December 9, 2013.  Angela’s pregnancy was completely normal. There were no warnings signs to prepare us for the long journey that began when Sophia was born. We went to the hospital on December 8, 2013 during a blizzard. The next day just after 6pm Sophia finally had arrived. Sophia’s birth was not without complication and after two years of searching, in April of 2015, she was diagnosed with a Cask Gene Mutation.  ( We were extremely relieved that after all this time we finally had a diagnosis for Sophia. The doctor explained the best they could to us what exactly it entailed. It’s an extremely rare disease that is they are still learning about. There were no answers given to us about what to expect because like everything else regarding Sophia its always a wait and see scenario.
 Screen Shot 2016-03-15 at 2.27.45 PM
 The doctor basically said to us in layman’s terms that we would normally have a better chance of hitting the lottery then having a child with a CASK Gene Mutation. This was only CHOPS 5th or 6th case seeing it and probably somewhere around 200 or so kids known effected by it. But where there is darkness there is light!
Two extremely important things came out of that day:
1. We finally had a diagnose for Sophia which was a huge relief for us.
2. The doctor informed Angela that none of this was her fault and there was nothing we could have done to prevent this. The second thing was huge because Angela, like any mother, blamed herself for Sophia’s condition and to hear those words was a huge sigh of relief for her and our family. Sophia has recently been diagnosed with Scoliosis. She is being treated for a curvature in her spin. She is currently on her 4th Mehta Cast which means she is casted from under her arm puts to the top of her pelvic area.
Sophia is currently two years old and is the strongest little girl in the world. Sophia has gone through way more in her two years then anyone should in a life time. Through it all she is still full of smiles and happiness. She works hard every day in her therapies and continues to get stronger and preserve through life’s challenges.

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