Peyton's Pack of Love- Angelman Syndrome

Imagine spending an entire day with an invisible hand pressed against your mouth, preventing you from expressing your thoughts, telling jokes, or verbalizing how you feel to those around you. Imagine not knowing when you need to use the restroom or how to put your clothes back on afterward. Not understanding the difference between feeling hungry or feeling full. Not knowing why people your age don't want to interact with you simply because you don't speak. Then, at the end of that day, imagine trying to get a good night's sleep when something in your brain keeps causing you to wake up every 15 minutes for no reason whatsoever.

That one day is Peyton Minicilli's daily reality. In 2017, just before her 4th birthday, she was diagnosed with Angelman Syndrome (AS), a rare neuro-genetic disorder that occurs in one out of 15,000 live births (or 500,000 people) worldwide. As someone with AS, Peyton experiences symptoms that are typical of other neurogenetic disorders, including autism, cerebral palsy, and Prader-Willi Syndrome. She has developmental delays, a walking and balance disorder, gastrointestinal issues, and no cognizable speech. As many of her friends and family are all too familiar, Peyton also suffers from severely interrupted sleep and a lack of satiety that causes her to obsess over food, steal other people's meals and snacks, and break into any available pantry, refrigerator or freezer.

As a result of her condition, Peyton works harder than most typical children (her siblings included). In addition to going to school full-time, she attends daily therapy sessions that challenge her to overcome the scientific barriers that have been forced upon her. Each day, she spends hours trying to improve her motor, cognitive, emotional, and speech skills through one-on-one training with an army of therapists. Despite the fact that no child would consider these therapy sessions to be "fun" by any measure, Peyton still manages to stay positive and light up the therapy room with her smiles and laughter. She didn't ask for this genetic disorder nor did she deserve it. Nonetheless, Peyton gets up every day and faces life's obstacles with unbelievable courage, grit, and determination. 

Peyton is a daily reminder of why we should always take time to pause, reflect, and appreciate those simple things that we take for granted in our own lives. As her parents, she has taught us to be more compassionate, to think deeper about social issues, and to place greater respect on those who overcome life's challenges no matter how big or small. 

Now, as a general matter, we do not enjoy soliciting strangers, family, and friends for donations. But if there's anything Peyton has taught us, it's that sometimes you just have to act no matter how uncomfortable it makes you feel. So here's what we are trying do: 

Recently, we became aware of an Ohio-based nonprofit called 4 Paws for Ability ( https://4pawsforability.org/) They provide very special service dogs to very special children in need. After a rigorous process we received the amazing news that Peyton has been approved for a dog! Unfortunately, these labrador and golden retrievers take a lot of time, energy, and money to properly train and place with a deserving child like Peyton. Therefore, we are seeking to raise the requisite $17,000 to train and place a service dog with Peyton through her GoFundMe page. Because it takes an average of 2 years from the completion of funding to to breed, raise, and train a service dog, we are trying to meet this funding goal as soon as possible so that Peyton can meet her new best friend as part of an amazing gift for her 10th birthday from her friends, family, and the world. 

Thank you all for considering a donation to Peyton's cause. Regardless of whether you contribute, just know that we love and appreciate you keeping her in your thoughts, and for all that you do for Pey and our family on a daily basis.

Hugs, 
The Minicilli Family  

To learn more about Angelman Syndrome and other ways to help please visit the Angelman Syndrome Foundation website: https://www.angelman.org/