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  • 10 & 9 Years Old

  • MECP2 Duplication Syndrome

John and Joseph are brothers born 16 months apart with MECP2 Duplication Syndrome or M2DS. This rare genetic condition causes many issues such as severe intellectual disabilities, impaired motor function, epilepsy, spasticity, speech, as well as gastrointestinal and respiratory issues.

When John was in his toddler and pre-school years, he worked hard to make developmental strides that most people take for granted.  Crawling and walking were milestones that, with therapy and determination, John achieved by the age of 4.  After enjoying his success for only a few short years, John began to experience seizures at the age of 6.  The onset of epilepsy caused John to lose skills that he had once gained such as walking, eating, and even turning pages in his books.  John now gets all of his nutrition through a G-Tube and uses a wheelchair for mobility.  John has also required frequent and lengthy hospital stays at Scottish Rite for respiratory infections and seizures. 

Despite the tremendous setbacks that John has experienced, he is an absolute joy to encounter! He embodies the phrase, “Sunshine on a Ranney Day” because even when things seem like they couldn’t get much worse to those who love him, John’s will, determination, strength and love shine through the darkness to declare that brighter days are ahead!

John and Joseph are overcomers who know that life is not a race where the finish line is at the end but rather, it is a celebration of what one has achieved at the end of each day!

Joseph’s primary struggles with M2DS are developmental.  Joseph began walking just a few weeks shy of his 2nd birthday and has been on the go ever since!  Fine motor skills, such as eating and writing with utensils, have been challenging for Joseph.  He communicates non-verbally and is learning to use a picture exchange binder with the hopes of getting a communication device in the near future.  

Both John and Joseph bring so much joy to their family, friends and everyone who has the pleasure of meeting them.  Their older sister, A.J., is their favorite person in the world and their favorite activities include taking walks to the lake and riding in the golf cart.  John and Joseph are overcomers who know that life is not a race where the finish line is at the end but rather, it is a celebration of what one has achieved at the end of each day!

Photography by Nicole Wood Photography

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