Nico & Josie

Nicole Marie “Nico” and Josephine Jude “Josie” Mueller are our identical twin daughters that were born in 2007. Both have a mutation on their DDX3X genes, which has caused them to have cognitive and physical disabilities. In utero, the doctors said they found some abnormalities in their brains, but they were not deemed severe. Although born 4 weeks early at 36 weeks, they seemed fine, but as they grew they were not developing like typical kids. We searched for years with several doctors to get some kind of answers and for a long time had no clues as to their condition. Only recently were we lucky enough to get this diagnosis so we know now what we are dealing with.  They are both great children – kind, respectful, empathetic, and fun. Nico is very outgoing and will talk to anyone. She speaks with some difficulty, but will do anything to help you understand her. She is the happiest kid and spreads so much joy with her smile and upbeat attitude. Josie amazes us every day with her continual progression. She is a non-verbal and a very laid back, cuddly little girl. She loves books and swimming. They have many adversities to deal with in life, but are lovely, happy girls that we are so thankful to have in our family.

Other Stories
Braylee

Braylee

Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs.

Lena

Lena

We finally got her diagnosis in November 2015. We have since become part of an amazing group of families and caretakers. Lena recently celebrated her 2nd birthday by learning how to crawl!

Kate

Kate

Kate is globally developmentally delayed, non-verbal and has autistic characteristics. She attends school in a severe/profound program where she continues to make slow but steady progress.

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