When 11-year-old Joshua was born, he had multiple medical complications and needs and was diagnosed before birth with a rare genetic disorder caused by a deletion of the distal long arm of Chromosome 22, or by a pathogenic variant in the Shank 3 gene, called Phelan-McDermid Syndrome (PMS). Individuals with PMS can have a wide range of medical, intellectual, and behavioral challenges varying in severity.
Joshua’s medical journey hasn’t been an easy one. “Unfortunately, there are times that Josh needs admittance to the hospital due to his medical fragility and complications, and is followed by about sixteen specialists by now, as well as attends a variety of endless therapies,” says his mom, Monika. “But we would not have it any other way, because this is our family, and this is our story.”
“From the day he was born,” his mom shares, “Our family has been on a mission to search for resources and services to help him overcome daily challenges, as well as give him an opportunity to thrive, shine and enjoy every day to his fullest.”
And that’s exactly what they did.
One of the community resources Joshua’s family connected with is Better2getherRVA. In addition to being the recipients of a family dinner, they were also able to have work done on their yard and deck through a fall mission trip by Gayton Baptist Church, a Better2gether community partner.
Most significantly, Better2gether connected Joshua and his family to Able Gamers, a national non-profit organization dedicated to improving the overall quality of lives for people with disabilities through video games.
Joshua’s family is so grateful that Better2gether made a referral to Able Gamers Foundation. “This is an awe-inspiring opportunity for our sweet boy to receive adaptive gaming equipment to help Joshua play video games that are suitable for his fine motor skills challenges,” Monika shares. “The entire process was truly wonderful and inspiring. It is absolutely amazing and exciting to be able to see Josh be part of the fun and play video games with the family, instead of just watching someone else play. It brings so much joy and laughter to all of us, and those fun memories as family we will always cherish.”
“Joshua is the cutest, most talkative nonverbal, easy going sweet boy you can meet!” shares Monika. “Despite daily challenges he encounters, Josh is always happy and smiling, he is our hero, our sunshine, our inspiration, he makes our family better and stronger. He loves to spend time with his siblings, listen to music, watch Disney shows on his iPad, especially Mickey Mouse, and to be outdoors or going for a ride.”
During life’s inevitably challenging times, Monika and her family say they not only felt supported by the Better2gether organization, but they are thankful for Better2gether’s impact on the entire community. “If anyone flounders – even just for a moment – our wonderful, loving and caring B2g family is always there to step in and help those who need to rally again.”