Our MED13L Journey

The story of Dylan and Logan

Dylan and Logan are loving brothers both diagnosed with MED13L in March of 2016 at Children’s Hospital of Philadelphia (CHOP). The boys live in New Jersey, USA. Dylan (born in 2009) presented with birth defects in utero including ventriculomegaly and a congenital diaphragmatic hernia (CDH). CHOP performed a CDH repair at one week old. Logan (born 2011) also presented with birth defects in utero and was born with a benign neck mass. There were early signs of global developmental delays for both. Dylan and Logan are considered nonverbal, only using minimal words, intellectually disabled and present with behavioral issues. They both attend a school for special needs and receive Occupational Therapy (OT), Physical Therapy (PT) and Speech Therapy. In addition, we have Applied Behavior Analysis Therapy (ABA) working with them on safety and behavior issues. Dylan and Logan are learning to use communication devices to help with every day frustrations associated with the inability to communicate and learning some sign language, but we have faced some challenges. Partially due to medical issues, there have been some setbacks or decline in abilities. In addition, language is always encouraged in our home. We work on it with them every day, all day long.
Dylan enjoys cars, music, dancing, having his feet tickled (“doodle bugs” named by his Gigi) and watching the movie “The Incredibles.” He also loves the water! Dylan will spend much of his summer days in the pool with his life vest (he is still learning to swim). Dylan also loves taking baths and the sensation of shampoo in his hair. He would use an entire bottle of shampoo if he could! His absolute favorites are his younger brother Logan and younger sister, Maggie.
Logan enjoys action figures, action movies, Spiderman and Batman, and also enjoys dancing and loves music. Oftentimes you will see Logan carrying a bucket or basket full of toys around with him. He is our toy hoarder, LOL. Logan loves to cuddle and will sit right on top of you as if he only weighed 5 lbs! Logan adores his big brother Dylan and younger sister, Maggie. He shares quality time with them while playing in the pretend kitchen and loves to take, make and deliver food orders for anyone visiting. One of his favorite things to say is “be right back!” We are happy to announce he is now saying “I love you!”
Dylan and Logan are very gentle, kind and loving towards their little sister, as she is with them. Dylan and Logan have a very special bond and we are extremely thankful they have each other. We often refer to them as our “Minions” because they have a “language” between the two of them and a unique way to connect like no other person can. Dylan and Logan both have a great memory and mimic everything they see. They both can reenact any scene from their favorite movies and often insist that others join in. We have many performances at your house! Dylan and Logan both enjoy being around people. If it were up to them, they would love a birthday party every day of the week, as their favorite song to sing is “Happy Birthday.” Dylan and Logan are both very loveable boys, with smiles that can light up a room! We are so incredibly blessed to have these sweet little boys in our life.