Justin spent the first 10 days of his life in an induced coma, and was trached at 10 days old. His trached is his only source of air and can only breathe for about 30 seconds max, should his trach become dislodged or blocked, before dying or suffering permanent injury to his brain. I have had to revive him through CPR several times. Having to perform CPR on your child is a heart wrenching experience for a mother, knowing that your child's left is literally in your hands.
Justin's voice box is also connected to the stenonsis and so he cannot speak like you and I. But, being the clever little boy that he is, he created his own language, a "quacking" to communicate with us. Although, creating a language was clever, it can be very frustrating at times, as we cannot always understand what he is saying, resulting in major meltdowns for him, not being able to express himself, and for me, as a mother, feeling as though I have failed my child. I have limited his outings to church, doctor's appointments and therapy sessions, and only take him out when it's necessary to do so. In that way he is not exposed to too much, and thus I am able to keep him healthy. This is no life for an energecic, funloving little boy.
In addition to the tracheal stenosis, he has born Colonic Dismotility (abnormal intestines), and feeds through a G-Tube, Austism Spectrum Disorder, Hyperspadias and a mild form of Cerebral Palsy. He requires 24 hrs a day care and observation, but allows none of it to dampen his spirit. He is a fighter, a ninja, I call him my "soldier boy", for he has fought for his life from the second he was born. He's a typical little born who loves Teenage Ninja Turtles, video games and Disney Cars.
Justin has spent the majority of his short life in an out of hospitals and have undergone numerous surgeries, including multiple fail attempts to reconstruct his airway. He requires the use of several medical devices/equipment and medications daily for him to maintain any quality of life. His ENT has referred him to Cincinnati Childrens Hospital in Cincinnati, Ohio, for a another attempt to reconstruct his airway. CCH are the pioneers of this type of surgery, so the chances for sucess are much better. However, this will require us to make multiple trips to CCH before & after surgery. He has also been referred to a Pediatric GI Specialists in Columbus, Ohio, for his digestive system following his reconstruction surgery. Unfortunately, we are unable to afford the numerous expenses that this will generate as we are a single income family, already overwhelm with medical bills for Justin and myself. I had to stop working when the twins(Justin has a twin sister Jordyn) were born, inorder to care for them and to take him back and forth to doctors appoinments and therapies, in and out of town.
The bible says "we have not because we ask not". I am hereby reaching out to you our family and friends asking you to please assist us in raising money for medical co-pays, travel and living expenses. His twin sister has to come with me as I have no family here to care for her, so I am unable to stay in a hospital for 4-6 weeks. There is a Ronald MacDonald House, but it is a first come first serve, and due to the number of children CCH services there is hardly ever any availability.
Please help Justin get an airway by donating, no amount is to big or small. Then encourge your family and friends to do the same by sharing this page. Thank you in advance for your contribution financially and prayerfully. May God bless you always!
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