JTWF Special Kid: Austin

Austin was born with an extremely severe and rare form of Hirschsprung's Disease, resulting in Short Gut Syndrome. He has ~30 cm. of functioning small intestine (only approximately 10% of his entire intestine remains). He is TPN dependent 13 hours a day and has an ostomy and g-tube. He has very high ostomy outputs, so he also gets an additional 1,000 ml of rehyrdation fluids in the middle of the day, so he's "hooked up" 17 hours a day. He is listed in Pittsburgh for a small bowel transplant. His Short Gut Syndrome has been managed by Pittsburgh Children's. Despite all the medical challenges, we try to keep his life normal. He eats some by mouth, goes to preschool, loves lawn mowers and tractors and is a huge joy in our lives. See http://grey.colorado.edu/shortgut/index.php/Main_Page for more information about Short Gut Syndrome.

~~As taken from his CarePage

JTWF Special Kid: Bella

We adopted Isabella in January 2010. We met her for the first time when she was 9 months old. Prior to us coming into the picture:
Bella was born with cocaine, heroine, marijuana, 3 different antipsychotic meds and pain killers in her system and needed to be put on phentanyl and morphine for withdrawals. She was also born with Gastroischisis (intestines were on the outside of her body). Surgery was done immediately to put the intestines back in. During this surgery half of her intestines were so badly damaged they had to remove them completely. This caused a condition known as "short gut syndrome". After her surgery she was unable to come off of the ventilator, she was unable to eat and was kept sedated. She was ultimately sedated for 9 months! The half of her intestines that was left in her belly had failed completely! She NEEDS a transplant of the small bowel to survive. She also has a Spinal cord injury that is so rare, none of the Neurologists at Childrens Hospital of Pittsburgh have ever seen anything like it. The believe it was caused in utero (while still in her mothers stomach) by an assault. Further complicated by seizures she had in the womb from the drugs! Please visit: http://savingbella.blogspot.com

~~As Wriiten by her Mother on her Blog

JTWF Special Kid: Daniel

Daniel was a sweet normal infant, and at 8 weeks old in January of 1998 he had a severe respiratory virus known as RSV..which resulted in a critical case of pneumonia in both lungs. He was very very sick and spent two weeks in the hospital.

We didn’t know a time that Daniel’s brain was malformed…and as he reached 5 and 6 months old… we attributed his lack of motor skills to delay due to the traumatic pneumonia and lack of oxygen. Sadly, that wasn’t the case.

At 11 months old he had his first MRI, and we found out that despite the traumatic RSV illness…he had actually been born with the condition known as PMG, or Polymicrogyria. The diagnosis was confirmed by a specialist, Dr. Dobyns..at the University of Chicago Childrens Hospital..

Daniel has” diffuse, grade 2b, PMG, with near diffuse frontal-perisylvian parietal involvement. The PMG involves 80% of Daniel’s brain,and is most severe in the temporal regions of the brain. The frontal lobes are significantly involved, while occipital lobe appears almost normal.”

From the age of 8 weeks until today (12 years later) our life has taken a much different path than we ever imagined it would.

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Daniel’s PMG and Microcephaly.. results in severe global motor skill dysfunction, seizures, feeding problems, respiratory problems, and orthopedic problems with his hips.

~~As Taken from his website: http://awesomedaniel.com/Home.html

Today's JTWF Special Kid: Zeke

Zeke is kept alive by technology they are alive only because of the ventilator they use to breath with. Zeke has diastrophic dysplasia a rare type of dwarfism. He recently received a life saving surgery, He had a c spine kyphosis of 130 degrees and it was compressing his spinal cord to the point we could of possibly have lost him. No one was willing to or knew how to do the surgery and i was told it would not help him and he possibly would not survive it. His surgery , after much advocacy and fighting with bureaucracy was done at AI Dupont hospital by a wonderful orthopedic doctor and was a success. He is home now in his cervical halo which you can see on zekes facebook page is Saving Zeke and now here is our Youtube Video: http://www.youtube.com/watch?v=Mytajno5AzU

~~As Submitted by Family and edited by JTWF

JTWF Special Kid: Jack

Jack has a rare genetic disorder, so rare it has no Name as yet. It involves his Chromosomes, they rearranged themselves during conception and nothing could have been done to stop it. Jack has lots of special needs, he has brain damage, global development delay, which is delay in all aspects of his development, he cannot walk or talk n can't hold anything in his hands, He has severe epilepsy and will never be independent. Jack is such a happy smiley wee boy, n is just gorgeous. We fundraiser for jack as much as we can. His fund is called Jack's Journey and this is also his Facebook page name.

~~As Submitted by his mother Angela

JTWF Special Angel Kid: TJ

‎"TJ" Thomas Joseph was a very special little boy. He suffered from a rare brain malformation called PMG (PolyMicroGyria) which causes developmental delays, feeding problems, and seizures. A week before his 3rd birthday, TJ had a seizure i...n his sleep. He didn't wake up. TJ enjoyed going to the Preschool for the Handicapped where he got Special Instruction, Speech, PT, OT, Sensory Therapy and Music Therapy. Although he never spoke, he knew he was well loved. TJ 11/15/07-11/7/10.

~~As Submitted By His Mother Angela

You can visit and join his FaceBook Group:
http://www.facebook.com/pages/Jonah-The-Whale-Foundation/103891286309639#!/home.php?sk=group_172260792819551

JTWF Special Kid: Elizabeth

Elizabeth was born Feb. 26, 2009, with a rare brain defect known as Dandy Walker Malformation. Because of this malformation, Elizabeth had to undergo brain surgery when she was only a day old to insert a shunt to control the hydrocephalus that had accumulated. She has since had four shunt revisions. When Elizabeth was six months old she went into respiratory failure following an upper GI to figure out why she was having respiratory problems. It was determined that she had been aspirating silently from birth, causing severe damage to her lungs. She was on a ventilator for more than three weeks and remained in the hospital for eight weeks. We decided to have a g-tube/nissen surgery to prevent further damage. (She takes nothing by mouth.) At this time it was discovered that Elizabeth also suffers from congenital hepatic fibrosis, a rare liver condition. Children with congenital hepatic fibrosis often need liver transplants at some point so we are closely monitoring that along with her kidneys. Elizabeth also developed double pneumonia when she was one and was in the hospital for six weeks. Unfortunately, she spent her first birthday on a ventilator. Elizabeth is currently on medication to control seizures and is on oxygen at night to help with mild sleep apnea. She is severely globally delayed. It has now been determined that Elizabeth has a genetic syndrome that is the cause of her medical issues and delays. She has had a rough road but she continues to smile and laugh each day, melting the hearts of all who know her.

I have attached a picture of Elizabeth. I write a blog keeping people updated on her medical status, http://myjourneyintoholland.blogspot.com. Also, I made a video highlighting her journey: http://www.onetruemedia.com/shared?p=d312929de00b6c1c6da29f&skin_id=1602&utm_source=otm&utm_medium=email.

~~As Submitted by her Mother, Susan