Meet our CHARGE Friends
Dominic Steinhauser
On May 28, 2008, Bill and Deanna (Rossi) Steinhauser, local residents of Frankfort, welcomed their second child, a beautiful baby boy named Dominic. The day he was born he was unexpectedly diagnosed with CHARGE Syndrome. His parents were told that he would be blind, deaf and mute. He spent 90 days in the NICU and has had many hospital stays since then. With every day of his life, he has shown that obstacles and diagnosis can be overcome and proven wrong. Today he is a 2 1/2 year old boy who is like other toddlers his age in many, many ways; he loves "Yo-Gabba-Gabba", playing with his big sister, Kylie, and chilling with his dad to watch a Notre Dame football game.
Dominic is a very special little boy. He suffers from vision and hearing impairment, inability to swallow (he relies on a 24-hour a day feeding tube) and he wears a monitoring device to check his oxygen and heart rate. He has experienced over 12 surgeries in his short life and he relies on 10 specialists at Children's Memorial Hospital to manage his care.
In spite of this, he has made significant progress in the last few years. He walks with a walker, hears with the help of a hearing aid and is learning to sign in order to communicate. While Dominic brings many challenges expenses, he also brings abundant joy and immense happiness to his family and friends.
(care of "Do it for Dominic" Fundraiser)
Learn more about Dominic's Story. -
http://www.caringbridge.org/visit/dominicjohnsteinhauser
More information on Dominic -
http://www.doitfordominic.com/
Gannon Moseley
Our son, Gannon, two years old has CHARGE Syndrome. This syndrome affects Gannon's vision and hearing so hi is considered deaf/blind. He has minimal vision and hearing in the right eye (coloboma diagnosis) and right ear. He also has some hearing loss in the left ear which is the only ear in which he is able to wear a hearing aid. The eye defects cannot be corrected but the hearing can be improved somewhat with hearing aids. Gannon also struggles significantly with pulmonary hypertension (high lung pressures) and chronic lung disease for which he requires oxygen. Respiratory infections often land him in the hospital. His inability to swallow his own secretions also causes him problems and requires him to be orally and nasally suctioned frequently. His suction machine is a life-saving measure. His heart defects include two holes – one (PDA) that was closed at two months old and another (ASD) that he still has but isn’t presenting problems for him at this time. Urinary reflux is a problem for Gannon that causes him to frequently get urinary tract infections and can require hospitalization as well. He is delayed in his development and growth. It is taking him much longer to reach milestones and his is less than 1% on the growth charts for height. Gannon also has some facial differences which include asymmetry of the face, right-sided facial palsy which includes the inability to completely close his right eye, droopy left eye, floppy/ misshapen right ear, and chin scars due to jaw distraction.
Gannon was born full term but with breathing difficulties. He did not cry at birth like our other two children did. He was immediately taken to the NICU for further assessment. The hospital where he was born at was not able to provide the medical care Gannon needed so he was transferred to a children’s hospital that was. He would remain at that hospital for the first four months of his life.
Some of the respiratory supports he required were CPAP, oxygen via nasal cannula, and intubations (tube placed in airway that is connected to a ventilator that breathes for Gannon). Gannon was only able to lay on his stomach for the first two weeks of his life otherwise he was not receiving enough oxygen into his blood. At two weeks old he had a jaw distraction performed which ultimately pulled his jaw forward nearly one inch and greatly improved his ability to breathe better on his own. Gannon also had a lot of feeding issues since birth. He has never taken a bottle. For the first six weeks he was fed through a tube inserted into his nose. He was still not gaining good weight and was vomiting. He was then sent to surgery to have a g-tube placed and a nissen fundoplication which wraps a portion of the stomach around the esophagus so that reflux and or vomiting can be eliminated or minimized. This surgery proved to be very beneficial for Gannon and he is now at nearly normal weight for his age. Gannon has had other surgeries including closure of a hole in his heart, tonsil and adenoid removal, and ear tube placement. Prior to Gannon’s adenoid and tonsil removal in September 2010 Gannon was hospitalized every four to six weeks. Since this last surgery he has been a much healthier toddler. Gannon endures at least one visit per week to his list of approximately 13 doctors that follow him he has five therapy appointments in the home each week. He receives 15 different medications with many being administered multiple times a day.
Gannon may be delayed but he has reached many milestones and makes us all proud every day. He is now sitting up and using a walker with assistance, although his primary mode of transportation is crawling. He wears AFO braces on his feet and legs that will help strengthen him. He is cruising on furniture. He can color and stack blocks and ride on a riding toy and climb onto the couch. He can crawl up the stairs (with mommy and daddy right behind him). He can wrestle with his daddy and brothers, ages 7 and 4. Although Gannon is very vocal he does not articulate words. He is learning sign language and has a handful of words that he will sign back to us. He recognizes his family by showing excitement when we walk into the room. He helps us give medications through his g-tube. He gets food out of the refrigerator and then puts it back. While he definitely has his time of protest he generally tolerates things and he is a very happy baby overall. We are so lucky to have Gannon in our lives and to be able to enjoy all his amazing progress and accomplishments.
By Gannon's family (care of "Do it for Dominic" Fundraiser)
Learn more about Gannon's story.....
http://www.caringbridge.org/visit/gannonmoseley
Finley Roth
When she was just over a month old, our beautiful princess Finley was diagnosed with CHARGE syndrome. In many ways, this helped to answer the puzzle of questions we had since her birth. We finally understood the reason behind the challenges that had been put before us. Finley spent most of her first four months in the hospital. She was diagnosed with Tetralogy of Fallot, a congenital heart defect, and she had open heart surgery to place a shunt in heart when she was 13 days old. Less than a month later she had surgery to correct a malrotated bowel and she had a g-tube placed in her stomach since swallowing issues prevent her from taking anything by mouth. She also has severe vision loss as a result of bilateral colobomas and she has bilateral hearing loss (profound in her left ear and moderate to severe in her right ear). And as if this weren’t enough for one little person to handle, after her second surgery she was diagnosed with hypoglycemia which is managed through continuous feeds and monitored via blood tests. In May of 2010, Finley underwent a second open heart surgery to do a full repair of her heart and she has been doing great! Today our days are filled with therapy sessions (seven per week) and doctors appointments (six specialists on regular rotation). We have been very lucky in that Finley has stayed fairly healthy in the last 12 months - aside from a couple of trips to the ER a brief stay in the PICU in February. In April she got glasses and she is also going through the process of being evaluated for a cochlear implant. Finley is making great strides in being able to eat food orally and tolerating some bolus feeding which has allowed her to have several hours off of her feeding pump during the day. This freedom has given Finley ample time to engage in her two favorite things - trying to learn how to crawl/practicing standing and exploring her surroundings by any means possible (rolling, scooting, etc.). Finley is a happy little girl (with a big brother who is her biggest fan) and she continues to amaze us every day with her determination (and stubbornness) and has taught us that the sky really is the limit!
Tracy Roth
Learn more about Finley's progress ...
http://www.sevenngibbons.blogspot.com/
Eva Nichole
Ellen
"i am a young girl with charge syndrome charge is very complicated but it doestn stop me form being who i am i am a good friend to everyone everyone loves me"
Ellen
Catch up with Ellen and check out her blog
http://ellencharger.blogspot.com/
Ellen
Catch up with Ellen and check out her blog
http://ellencharger.blogspot.com/