Mason D.

Mason was a wonderful baby. He reached all his developmental milestones and loved life. Around his second birthday we noticed that Mason stopped talking and seemed not to be able to hear what we said to him. so we took him to the Children’s Hospital where he was diagnosed with Autism. Since then Mason has worked very hard and is now starting to talk well. We also have recieved a National Service Dog for Mason and I don’t know what we would do without Zeus. They are a match made in Heaven. Thanks to the angels at NSD.

Andrew B.

Andrew is a happy sweet little boy with a big heart and personality to match! We are so happy to have him in our lives. He loves music and the Teletubbies! He has a rare genetic disorder with the 17th and 20th chromosone called Trans Reciporcal Location and it causes developmental delay, heart condition, and we have had some challenges, frontal encephocele that required a craniotomy. He is a fighter and bounced back quickly and despite some setbacks is progressing and learning well. He is a gentle spirit and comical.

Joe M.

 My son was born with Cerebal Palsy. He has a lot of issues with spasticity and we are trying to manage it but it’s not going very well. The doctors have mentioned the baclofen pump but he’s to small he only weighs 29lbs. Joe is my whole world I would do anything for him.

Austin W.

Austin is a very handsome young man, he was born
without incident and matured quickly at normal rate, until 2. He then accidentally hung himself in an electric window, causing an anoxic brain injury. He is overcoming and learning quickly again although he is developmentally delayed in all areas, we hope for the best.

Kyle

My son Kyle was born with a cord wrap and suffered a severe brain injury. Here are his Dx:HIE{Hypoxic Ischemic Encephalopathy} at birth with severe SQCP, Seizure Disorder, Lung Issues, Dysphasia, Non verbal, developmentally delayed, GERD, 100% G-Tube fed, Glasses, severe arthritis in back and hips,Bilateral BTE Hearing Aids, wrist splints, AFO’s, PM Night Knee Splints, Wheel Chair full time, The Vest Air Way Clarence System,
Mouth and Nasal Suctioning every day, Stander and Walker. Knows how to sign yes and no. He is another blessing to our family and has the most beautiful smile. We have 6 kids and a granddaughter. God is good.

Ryan H.

My son Ryan has a rare brain disorder called Schizencephaly. He was born with this and it caused his different abilities. His full Dx are:Schizencephaly-cleft in skull Bifrontal , Non verbal, SQCP, Developmental Delays, GERD, 100% G-Tube, Congenital Nystagmus with poor vision,Optic Nerve Pallor of both eyes,Hyperopia, legally blind, Seizures and Reactive Airway Disease. He recived a trach on 7-24-2006 due to respitorary arrest after hip surgery. He was on a vent and in the hospital for 5 weeks. AreoTrach treatments, Oral/trach Suction if needed, Stander, Wheel Chair full time,AFO’s, Wrist Splints. We finalized Ryan’s adoption on 8/18/2006 while we were in the hospital he is a true blessing and another gift from God.

Alexzandria A.

Hello Everyone this is my daughter Alexzandria, she is 5yrs. old and she is my special needs child. When I first came out pregnant with Ally her father and I were thrilled, and throughout my pregnancy I was fine never had any problems with anything. Went to my doctors office regularly and ultrasounds never showed anything wrong. Then on December 4th 2002, was when our bundle of joy came in our lives and in my heart always thought of her as my special daughter. We came home with her and everything was fine. Until one day late at night I was feeding her and my husband was up as well, then after she was feed I noticed she had trouble breathing, then she stopped breathing, I yelled at my husband and call EMS and we gave her CPR. As her pediatrician met us at the hospital they started running test and found that she had RSV and she wasn’t premature or anything she contracted from someone whom was sick. Then they keep her fo further observations, then we got to go home but couldn’t go home until we took CPR classes. Then we had to do CPR more than expected and told the doctor what was going on and we were given a Apnea Montior to see if Whether she had sleep apnea or not. Test results came back negative. The doctors didn’t know what was wrong with her, then she over came everything, then when we thought the worst was over, at 4 months she had her first Grand-Mal Seizure and didn’t know what it was until we went to the hospital and it happened again and the doctors said that it was a seizure that she was having, at this point my heart sank and I cried. I was so depressed because I didn’t know the first thing to do with a child with this special needs, we had to explain this to her 3 older sisters in case if she had one while they were playing with her. She had a couple more seizures after this then she at 2 yrs. old she was seizure free for 1 yr, then she started doing a blank stare, told her neurologist and he said that was another form of seizure and usually goes unnoticed with children. So then there came more test, and now she is on 3 different meds to control them and have been working very well. She started pre-k this year and she is so smart, before we found the right meds for her she couldn’t swing on swings she was kind of limited on things, but now the meds are wonderful she can swing without falling off. She also has speech delays because of her seizures but she a wonderful little girl and learning so much and catching on slowly but she is getting it. She is just as normal as other kids but just have to do things a different way. What else has helped me is working closely with her teachers and also have joined a support group with the school to better understand her conditions and meet with other parents and share our problems and other things and I am totally for Support group meetings because there everyone knows what you are going through because they have been through it. And now that she is 5yrs old they have diagnosed her with Epilepsy Partial Complex. Thank You all for taking the time to read my story of my daughter.

Yvonne

Natalie

My daughter’s name is Natalie. She is 6 years old and has 2 older sisters, 8 and 10. When Natalie was 3 weeks old she was stricken with Group B strept meningitis. It is a bacterial meningitis that most kids do not live through. It pretty much destroyed her brain when it was done. She is blind and has cerebral palsy, and an intractable seizure disorder. She is the most gentle, loving, sweetest little girl. I am a little prejudiced. She has such a calm spirit. I am a nurse by education, and have worked with special needs children coming through the Pediatric Intensive Care Unit, and the Neonatal Intensive Care Unit. Being on the other side is so completely different. How much I have learned and shared with others in my situation, or just curious about Natalie. I would love you to feature Natalie for your website, because our family thinks she is pretty fantastic. Developmentally, she is about 6 months old. She loves to play with links, and she loves textures. Touching is her thing. Thank you for taking the time to hear about our little angel.

Lucas

When Lucas was born  he was healthy,walking,talking,and everything a baby should be doing,around 13 months he started having seizure’s,though he was having the seizure’s it didn’t seem to effect any thing else.when he turned about 18 months he lost his hearing, then a few months later he lost the ability to do everything.He couldn’t walk ,talk,or even sit up on his own,the doctors are all at a loss,the have no clue why this has happened.Now he is 9 and through the years he has had pneumonia 25 time he has the abilities of a 4 month old baby.his body has regressed he now has a heart problem, seizures,lung problems,gastric problems,dental problems,his shoulders, knee’s,and elbows dislocate all the time,he also has a mild dislocation of the left hip,now he has urine reflux which could be a result of a neurogenic bladder. at this time he is undiagnosed to receive any kind of benefits he was giving a diagnosis of a progressive degenerative disease.Lucas loves to watch sports his favorite teams are the Pittsburgh Steelers, the New Jersey Devils and the New York Mets, he  loves cars, toy story, balloons and trees, he does not like cold water, nasty weather, and being with out his mommy. No matter how much this child goes through he always has a smile on his face,and is  very lovable.

Bethany B.

 

Bethany does not have a diagnosis.  She recently observed her 5th birthday.  She is in good health. She has an older sister named Dana, 16 and a younger brother Seth, 7.  Bethany has trouble swallowing think liquids or extremely chunky foods or foods that require a lot of chewing.  You can read more about her and our life at www.mysnugly.com.  Currently we have been working with Greenwood Genetics Center to search for a diagnosis.  She has been ruled out for Retts Syndrome and Angelman Syndrome as well as many others.  She gets physical therapy and speech therapy for swallowing.  She will be in kindergarten this August and be receiving adaptive P.E. and occupational therapy.  She will be included in regular ed twice a week for an hour each time.  Some things on my wish list for her include a Sleepsafe bed, a van conversion so she can remain in her wheelchair, and a downstairs bedroom so I don’t need to carry her upstairs.  The top of my list is the Sleepsafe bed because she stands up in her bed and it is very dangerous for her,  Our insurance as most would not pay for any of these items.   Also a diagnosis may get her back into CCS for OT / PT services which would be absolutely wonderful!