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Hero #5 Updates

    Hero Family #5

    Erika Renee Mazzocca

    Erika was born June 12, 1996. Erika was born with two very rare syndromes Wolf- Hirschhorns and Beckwith- Weidermann. It was not until returning from a family vacation that Erika had an 8 hour long Grand Mal seizure and was life flighted to childrens that she was diagnosed with her syndromes. Erika does not talk and makes her needs known by sign language. She is hypotonic (poor muscle tone) and can only walk short distances before she has to go into her wheelchair. Her seizures are all of Grand Mal in nature and she can seize for hours. Erika is now battling a weight issue she is 13 years old and only weighs 41 pounds. She does not chew food so all her food is mechanical soft she recently in May failed her Modified Barium Swallow and the doctors want to place a feeding tube to increase her weight and keep her from aspirating liquids.




    Dante Anthony Mazzocca

    Dante was born November 28, 2004 he was premature and born at 29 weeks gestation and weight was 4 lbs. Dante also has Wolf-Hirschhorn and Beckwith-Weidermann. Dante was born with bilateral hydronephrosis (enlarge pelvis of kidneys), hypospadias (urethral opening in the wrong spot), bitateral club feet, reflux all of his liquids are thickened to prevent aspiration, chronic UTIs due to kidney reflux. Dante had kidney surgery, stent placement in December of 2004. Then started to have uncontrollable seizures resulting in multiple hospital stays at one point even had epileptic encephalopathy. Dantes seizures are all different in nature and he is on multiple anticonvulsants to try to control them. In 2005 he had serial casting for club feet. In 2005 he also had surgery to repair hypospadias. In 2006 Dante had tubes put in his ears and is hard of hearing. Continued to seize. In 2007 Dante had a seizure resulting in respiratory arrest and required ventilation( knocked out his front tooth). In September of 2008 Dante was not acting like himself went to see pediatrician who at the time thought he was having a appendicitis but when CT scan was performed it was found that Dante had a Hepatoblastoma (malignant liver tumor) and sent to Childrens Hospital for treatment. September 13,2008 confirmed liver tumor and chemotherapy was started. He had a infusaport inserted that day and first round of chemo began. Dante underwent chemo every 21 days and had 3 consecutive days of chemo at a time. In January of 2009 Dante had liver surgery lasting 12 hours to remove the tumor. After surgery he recovered and started chemo again for 3 more cycles. In may of 2009 Dante is classified as cancer free but the tumor was high grade and probability of it returning is great. We keep finger crossed that each month his tests come back that he is still free of cancer. In July Dante unfortunately had an accident and fell off the bed and now has a fractured femure and is in a full leg cast due to the chemo and the fact that he does not walk his bones are very week so he will have 8 weeks of healing to go.

    Dante also does not talk he relies on his mother and caregivers to relay his wants and needs. Dante does not walk and we are meeting with the ortho doctor to check leg next week and see about his club feet. Dante also does not chew and only eats baby food at this time.

    My three children are the only ones in the world with the syndromes so it is difficult to ask others for advice on them. I know people are looking at this going 3 children.

    In 2003 I lost a child Edward Joseph Mazzocca Jr. he also had the syndromes. He was 5 years old. These syndromes are genetic in nature.

     

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