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2018 Annual Appeal - Earth Angel

In the early part of Angelina’s childhood, she seemed like your average child; she was vibrant, energetic, silly, and always the life of the party.  As she became a toddler, she began to show unusual signs of developmental delay.  Doctors thought she might have been hearing impaired.  As time went on, I noticed more unusual developmental issues but doctors continued to give her an array of diagnoses including intellectual disability, microcephaly, autism and others.  Though she did show some symptoms of these diseases, none of the many specialists we saw could ever seem to come to one conclusion. 

As the years went on, Angelina’s special education program became less appropriate for her, while her needs for care at home became more than I could manage.  I enrolled Angelina in the residential special education program at Ferncliff Manor in November of 2014 when she was eleven years old.  It was the most distressing decision I’ve ever made in my life, but I knew it was the right one.

Last year the team of doctors at Ferncliff Manor discovered an abnormality in Angelina’s testing.  Soon after, she was diagnosed with mucopolysaccharidosis type III, also known as Sanfilippo syndrome, a rare genetic condition that attacks the central nervous system and causes terminal brain damage.  There is no treatment or cure for children diagnosed with this devastating disease.  

When I read the report that confirmed Angelina’s condition, I felt a piece of me die inside.  There are no words to describe the feeling a parent has when they are told their child has an illness that will limit their lifespan.  The hardest part is knowing there is nothing I can do. All I want is to hold my daughter and tell her everything will be okay.  I try each day to be as strong as possible because I know that a strong me is what Angelina needs. 

The feeling of being helpless, knowing there is nothing I can do is the hardest part of being a Sanfilippo parent.  She is unable to tell me how she feels, which makes her regression that much more painful.  The one thing I don’t want is sympathy.  I need strength, courage, and hope for a cure. 

Nothing else brings a smile to my daughter’s face like the moment she sees me.  Each day when I visit, I feel her words in my heart and share the joy that being together brings to both of us.  Our time together is what gets me through every moment of heartbreak that I experience. 

For Angelina, Ferncliff Manor is far more than a private residential school.  It is a home away from home where she is cared for each day by skilled and loving staff who meet her every need, whatever it takes.  For me, it is where I know she gets the care she needs so that I can focus on the most precious gift of all, our time together.  Whether we go to a park, visit nearby family, shop, attend a special event or just sit together in a quiet place, the quality of our time is possible because of the care she receives each day.

As Angie’s mom, I am asking you please support the important work Ferncliff Manor does each and every day.  Ferncliff strives to provide the highest quality of life possible for their students in addition to assisting families to cope with unspeakable circumstances.  Your monetary donation is greatly appreciated.

Samantha Vitola and Angelina Pichardo

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