We welcome all levels of donations. Get involved in the lives of families in need, or make a financial contribution below.     Volunteer Registration Full Name: Address: City: State:           Zip: Email:   Financial Contribuitions Use PayPal to make a secure donation using your credit card. To send a check, please use our mailing address.       Joshua was born June 9, 2009 at The Children’s Hospital of Philadelphia, with Spina Bifida. We found out at our 20 week ultrasound that he had Spina Bifida, and went to work immediately to find the best place for him to be born and to get treatment. That is where we discovered The Children’s Hospital of Philadelphia also known as CHOP. They have a center in the hospital that deals solely on fetal diagnosis and at that time the first in the world "Special Delivery Unit", where you can give birth to your child in the children’s hospital, and get immediate care for them while mom is recovering from delivery. Prior to Josh being born we were told he would have many issues that would challenge him all his life. For an L4 myelomeningocele lesion those would be paralysis from the waist down, club feet, bowel and bladder incontinence, decreased IQ due to hydrocephalus which in turn would require a shunt for the fluid to drain from the brain, and of course due to the paralysis a wheelchair, braces or both would be necessary. Josh was born 7 weeks premature weighing in at 5lbs 1oz. He was officially diagnosed at birth with Spina Bifida (myelomeningocele), Hydrocephalus, and Chiari II Malformation. He was immediately taken down to the NICU, and at 13 hours old had his first surgery to close his spine. His Neurosurgeon decided that, at that time he would not insert a shunt, as doing so would be permanent. He wanted to see how Josh would react during his stay in the NICU. Josh was a true fighter, after going through a battery of tests daily, coming off of supplemental oxygen after 3 days, and gaining good weight he came home only 10 days later, still minus a shunt. Once we came home the hard work began, and we started off running. Little did we know at the time that we would not be the only ones running. We enrolled Josh in Early Intervention at 3 months old, having PT show up twice a week. We believe this was instrumental in getting Josh where he is today, and strongly encourage getting these services for your child as soon as you can. We decided continue our care with CHOP after Josh was released due to two main reasons. It was the first ever Spina Bifida clinic in the U.S., therefore has years of experience, and has the ability of getting you seen by all of the necessary Dr's in one visit. The second reason is that the Neurosurgeon who closed Josh’s' back is one of the best in the world who has over 30 years’ experience, and we wanted to maintain that continuity of care from birth through those first few critical years. We have been going back to CHOP every 3 months since he was born to meet with the Dr's in Spina Bifida, Urology, Orthopedics, Neurosurgery, Occupational Therapy, and Physical Therapy. We have also made many trips in between the three month intervals to see the Neurosurgeon regarding Josh's hydrocephalus and trying to determine if he needs a shunt. On a consensual and educated agreement with the Neurosurgeon we let Josh tell us through visible signs whether we needed to have a shunt inserted. Because of this hands off approach of letting the patient tell you if and when they need something done, we have avoided needing to put a shunt in, and have cleared one of the main hurdles for his condition. Just after Josh' first birthday he began Aquatic Therapy through Early Intervention. It was a rough start with separation anxiety, but you would never know that now. He loves the pool and the water, and can't wait for each Friday to splash and kick in the water. Josh has also recently began Speech Therapy as he is slightly delayed in speaking. Josh has made strides in his therapies, and has surprised us all when last year on Thanksgiving Day he decided to walk. Josh not only walks, but now runs around everywhere. He is weak in his legs and does not have full sensation in his feet and needs fixed AFO braces to help him get around. Because of this weakness, Josh walks around with his knees bent which creates a bad posture for him, but also tires him out a lot quicker when he walks or runs. The braces help him out with this, and we have seen a drastic improvement for him. Every parent wants the best for their child, and as you can see that includes us. The best place for our son to get treatment is in Philadelphia. It has been a long, hard and draining road both emotionally and financially. We were so lucky to stumble upon Charity For Children’s article in the Family Times magazine about a year ago. What an amazing organization that truly cares for the children of Central New York. Nina has been nothing but helpful and kind to us since contacting her, and has helped us with our expenses to Philadelphia numerous times. We are extremely thankful from the bottom of our hearts, to be able to continue to get Josh the best care he needs and deserves. Josh keeps defying the odds every day and is a true fighter. We have great support in our family, our Dr's, both here in Syracuse and in Philadelphia, and without a doubt Charity for Children. We started a blog as we were going through the pregnancy for Josh, and the title for it was "Miracletobe". Little did we know how fitting that title would be. Just like all the amazing children that this organization helps he too is a miracle! Mark and Jennifer Harris   Copyright 2012 Charity for Children, Inc. P.O. Box 204 • Syracuse, New York 13206 • 315-234-1443 Site Donated by EPOCH Advertising