2018 Just for J 5K Denver Recipient
Dustin is a magnificent and gentle picture of the human spirit, and although far too familiar with adversity at such a tender age, make no mistake; he is “all boy”. A fearless sense of adventure and discovery bundled into the sweetest of demeanors; taking every opportunity to observe and absorb all his little life has to offer. He is a deep thinker, full of the richest creativity, pondering and searching for real meaning in everything and everyone he encounters. Often when asked questions one can clearly observe the wheels of his little mind churning away before he proffers an often profound and well thought out answer. Such a delight!
Dustin was born with Goldenhar Syndrome, also known as Hemi-facial Microsomia (underdeveloped jaw, cheekbones, eye, and ear abnormality). He was born without a left ear and a dermoid on his left eye. He currently wears glasses and a BAHA hearing aid, all of which is held in place by an elastic head band. Having no ear for support, his glasses are dependent on the hearing aid to hold them in place. On top of this, Dustin was also born with two ASD's and one VSD (holes in his heart).
Dustin is a rare identical twin, because his brother does not have these conditions. He is considered a special needs child and has required extensive specialized services including: Physical Therapy, Occupational Therapy, Feeding Therapy, and Hearing/Speech Therapy. Now that he is 4 years old he is becoming increasingly aware of some of his differences, and has often asked for a big ear like everyone else he encounters.
During his brief little life thus far, Dustin has endured seven surgeries including; GI biopsy at 3 weeks old, Nissen and feeding tube placement at 1 month old. At 2 months, doctors were concerned for his breathing and scheduled surgery to clip his Laryngeal Malaysia. They were not able to reach it, however, as they discovered he had a collapsed airway due to his tongue, which was caused by Goldenhar. Essentially, Dustin was choking on his tongue. He was immediately admitted to NICU until next steps could be determined. Two options now became the looming decision: jaw surgery or a tracheotomy. Though there were no guarantees with the jaw surgery, after much deliberation, the medical team felt it was the least invasive procedure to try before giving him a full tracheotomy.
At 3 months old Dustin underwent Mandibular Jaw Distraction surgery, where they broke his little jaw in order to extend both it, and the tongue base forward with the hope of alleviating the obstruction of his airway and allowing him to breathe freely. This was a lifesaving procedure! At 4 months old, Dustin again underwent surgery to remove the hardware from the jaw extension procedures. At 2 years old he had surgery to address urology issues. And at 3, he had the Dermoid removed from left eye to help prevent his eyesight from worsening.
Following 3 arduous years of G-Tube feeding, training, and encouraging him to be able to take, chew, and successfully swallow solid foods, Dustin has now been G-Tube free since October of 2017. This day was an enormous celebration after years of feeding therapy! Not to mention, it has freed him to be rough and tumble with his brothers, which has been – though at times a headache (as parents will well understand) – most rewarding and enriching for both Dustin and his brothers!
It is most likely that Dustin is facing more surgeries. It is projected that he will require 2 more jaw surgeries throughout his childhood to correct his bite as his adult teeth develop.
Currently Dustin’s family is looking at options and costs involved in his ear reconstruction. Funds raised will help with this particular surgery which is estimated at $65,000, as well as travel expenses. This surgery includes the following:
1. A new ear to build confidence and hold his glasses in place.
2. A bone conduction hearing aid implant which eliminates the headband he has to wear.
This is considered cosmetic surgery and is not typically covered by insurance. Hearing aid hardware and implants may qualify for partial coverage. Because the hearing aid Dustin currently uses is an external headband hearing aid, the family will have to purchase a new unit along with the implant hardware. Dustin received the BAHA hearing aid as a donation from the Ear Community when he was 6 months old. This was crucial at the time for developmental reasons and enabling hearing on his left side.
This procedure will make a world of difference for Dustin as he starts Kindergarten in the Fall of 2019. What a crucial time for a young boy, in his development of self-awareness and confidence. Having an added assurance and a certain sense of normality, encouraging young Dustin as he ventures into the world meeting and making new friends and growing as a young man.
Any funds raised will help Dustin’s family pursue the best path, and explore the most beneficial options available for him. -2018