Dustin Neerhof

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 demeanor; 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!

Currently Dustin’s family is looking at how they can afford to enable Dustin to receive a critical ear reconstruction surgery. Funds raised will be for this surgery & travel expenses; all estimated at $73,666.

Thanks to the "JustForJ" non-profit foundation, who helped begin this fundraising in 2018, Thank you to Dr. Tahiri for lowering surgical fee's, Thank you to Uncle Justin for scheduling Dustin's procedure out of Linden Surgical Center at cost, and thank you to Uncle Justin and Aunt Kristin for hosting a fundraiser in California! Thank you to Cherie Neerhof for hosting a Butter Braid sale and all how purchased! Thank you to all private donors through personal checks. 

Because of all of the listed above efforts, as of April 9, 2019 the cost is now down! Dustin's family still needs to raise $1830 before June 2019 in order to move forward with his scheduled surgery date of July 12, 2019. 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 will eliminate the headband he currently needs to wear.  

Unfortunately, his surgery is considered an elective process and is therefore not covered by the family's insurance.
Dustin currently uses an external headband hearing aid, and the family will also need to purchase a new unit along with the implant hardware. Dustin received his current 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, in 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. 




ABOUT DUSTIN

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 5 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. 

Thank you for your consideration!
Funds raised will help Dustin’s family pursue this life changing path, and the most beneficial options available for him.

Team Dustin consists of Jared & Jaalah Neerhof (Dustin's parents) and Melissa and Simon Lovell (Dustin's aunt and uncle). We are based in Arvada, CO. 100% funds raised will go straight towards Dustin's ear reconstruction surgery and travel costs. Funds raised will be directly deposited into Dustin's savings account under his parent's name.