Our precious beautiful daughter Mia just turned 2. She is the most happy and bubbly little girl, whose smile lights up the room. Like most kids her age, Mia loves music and “dancing”, going to the park and most of all her baby brother Gianni. She is a strong, determined little fighter who never gives up and has the soul of a lion! Unlike her peers, Mia isn’t walking, she isn’t able to have conversations and she cannot purposefully use her hands, as she has Rett Syndrome. Rett Syndrome has robbed Mia of her ability to explore and fully interact with the world around her. She is limited in her body, with sound intellect, but struggles to communicate.
Rett Syndrome is a rare debilitating neurological disorder that is caused by a random mutation on one X chromosome and affects 350,000 girls and women worldwide. While she may appear completely healthy at birth, devastating symptoms await and present themselves at around 12-18months of age. The resulting regression leads to lifelong impairments including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the girls lose the ability to walk.
However, there is real hope. Rett Syndrome has been proven in labs to be reversible and curable. Numerous clinical trials are underway to develop treatments that will allow girls with Rett Syndrome to be more functional and Gene Therapy holds the promise of a complete cure.
Our wish for Mia is a childhood full of memories of singing along to the Wiggles, Justin Bieber and Drake, chasing her brother Gianni around the house and endless conversations about why the sky is blue.
A cure is almost a sure bet, but we need it NOW. With further funding we can augment and expedite research and give Mia the only gift she really wants; to be free from Rett Syndrome! We don’t want our daughter to be defined by this! We need your help to make this miracle possible for Mia and all the other 350,000 girls worldwide by donating to the Rett Syndrome Research Trust (RSRT).
Thank you for your support from the bottom of our hearts.
Adrian and Chantal Mancini