Our Stories

On a hot day in July of 2015, we welcomed our beautiful baby girl, Elle, to our family. As we navigated our way through the challenges of being first-time parents, we started to notice that she was having a hard time hitting her milestone goals. Our pediatrician suggested early intervention services for torticollis and gross motor delay. Despite these resources, Elle still struggled. Given that she was such a pleasant, happy and easy baby, we had a difficult time justifying that something was “wrong.” Eventually, our search led us to Boston Children’s Neurology, where electroencephalogram testing found that Elle [...]

Our daughter and sister Daviana was born on November 3rd, 1998. It was a terrifying time when she was born. Daviana was not breathing, and they thought she had hydrocephalus because her brain was full of fluid.  This was a shock because the results of testing and ultrasounds throughout the pregnancy all came back from the doctors as normal.   The doctors were at a loss, and she spent 8 weeks in the NICU at MGH.  The doctors finally had a genetic diagnosis, Prader-Willi Syndrome (“PWS”), a rare genetic disorder.    PWS was a challenge to manage throughout her life, constant [...]

When Valarie Malyneaux was diagnosed with vitiligo 20 years ago, her doctor told her there was no cure for this chronic immune disorder – and it turned her world “upside down”. As Valarie recounts in the latest Cures for the Commonwealth video, “saying those dreadful words: ‘there’s no cure, and there’s no support group,’ shook me to the core.” Vitiligo has “been around for centuries, still somewhat unknown or unrecognized,” Valarie says, “where your pigment cells are dying – they are being attacked.”But Valarie turned her despair into a commitment to helping others who suffer from this rare disease. She started VITFriends [...]

My husband, Mike, and I were just 29 years old when he was diagnosed with behavioral variant Frontotemporal Dementia (FTD), a progressive neurological disorder with no known treatment or cure. Our son, Noah, was about to celebrate his first birthday. At a time of growth, our family would learn to live with loss. Four days after my husband received this terminal diagnosis, my mother died unexpectedly from a heart attack in her sleep. She was 58. Seventeen days after her passing, my father was diagnosed with Alzheimer’s Disease. He was 59. In the span of 21 days, my entire [...]

I was diagnosed with Limb-Girdle Muscular Dystrophy (MD) at the age of 24. Born, raised, and educated in Cambridge, MA, I received a bachelor’s degree in Fashion Design and Merchandising and a Master’s degree in Business.  I first started experiencing strange symptoms around 2009. While in graduate school  my leg would just give out on me without notice and I began to repeatedly fall and would need assistance to get back up.  Around this time I also began to notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable [...]

“Your girls are a mystery.” Not the words a parent wants to hear from a neurologist.  Our girls, now ages 8 and 10, have never developed “typically.”  As infants and toddlers, IF they hit a milestone it was extremely late.  One is pre verbal, one none verbal, both have epilepsy, both have some physical challenges and both have intellectual delays.  Our life has been filled with physical therapy, occupational therapy, speech therapy, medical appointments and EEGs for 9+ years.   Once our younger daughter had her first seizure at 2, our medical team knew we were dealing with something genetic.  [...]