Be sure to check the Duplication fund box
It is tough to imagine a rare genetic disorder that steals all that you worked so hard for, talking, walking, playing, chewing, and just being a kid enjoying the good things in life. These are things most people never have to think twice about doing, but for Sonny these are the abilities he is working so hard to gain and retain. For Sonny, we cheer him on with each milestone! Every bit of his life is celebrated and he knows how much he is loved. If only our love could reverse this relentless, rare genetic disorder, MECP2 Duplicaton Syndrome.
When we first found out about MECP2 Duplication Syndrome and the terrible prognosis, our world was shattered. Everything about MDS seemed unreal at first and is still hard to accept. How could any child have such a terrible diagnosis?
Knowing that with MECP2 Duplication Syndrome, Sonny will inevitably regress and lose his skills and abilities, potentially not live a full life, and eventually have other health issues, we have no choice but to fight harder for Sonny! Sonny goes to therapy daily, travels to the best team of specialists at UPMC to care for him and make sure he is always healthy, and has the greatest support around him, YOU!
There is hope though, as doctors have found curative therapies but need funding to bring the therapies to our kids. We refuse to let MECP2 Duplication Syndrome steal his skills, future, and our Sonny Boy! Sonny deserves to play like other kids, live a long, happy, and healthy life!
Together we will do everything that we can to fund these curative therapies that will reverse MDS and change the current projected future for Sonny! Your donation will bring the therapies to the children and reverse thE MECP2 Duplication Syndrome outcome! What a gift that is!
We cannot imagine life without Sonny and try not to think about it, but the reality is, he has an extremely rare genetic disorder with a horrible outcome. These therapies are his only chance and the longer he goes without them, the worse things will get for him.
If you are able to, please consider donating to help our son receive the life-changing curative therapies and others with MECP2 Duplicaton Syndrome. These therapies will stop all of the bad things from happening, giving them the chance at life they deserve! Together we can bring the cure to the kids!
May God bless you!
Love,
Ashley, Steve & Sonny Staniscia
Sonny's Featured Story on UPMC
https://www.chp.edu/our-services/genetics/patient-stories/sonny-staniscia
