Meet Ethan!


Ethan Desai

 


Ethan Desai
Florence, Kentucky


The dire results from a routine mid-pregnancy ultrasound were not what Neel and Debbie Desai expected to hear that day.  The doctors initially diagnosed their little boy with a lethal skeletal dysplasia.  Subsequent amniocentesis and genetic DNA testing revealed that their baby had Osteogenesis Imperfecta Type III/IV.  The Desais began an immediate quest for more information and a better understanding of the rare disorder.  

Ethan was born with multiple new/healed fractures of his ribs, femurs, tibias, jaw and wrist.  The next 11 days were spent in the Neonatal Intensive Care Unit.  As a result of his diagnosis, the doctors said he would face a host of disabilities.  They predicted Ethan would never walk, need a feeding tube, possible tracheotomy (a hole in the throat to aid his breathing) and have hydrocephalus (fluid on the brain).   Ethan began his first intravenous infusion of pamidronate, a medicine used to strengthen bones, decrease pain and reduce fracture rates, at three days old.

Ethan never developed any of the complications predicted by his doctors.  To the contrary, with the help of some of the leading physicians in OI care, Ethan has proven all the other doctors wrong and continues to do so.

At 14 months Ethan had a Fassier-Duval (F-D) rod placed in his left femur, a telescoping rod co-developed by Dr. Francois Fassier of Montreal Shriners Hospital.  He also had K wires inserted in both tibias at this time.   This past summer Ethan had the rods replaced with new F-D rods in both of his femurs at Omaha Children’s Hospital by Dr. Paul Esposito, an OI Foundation Medical Advisory Council member.  Ethan is scheduled for surgery in November to replace a right tibia K wire with an F-D rod, which will also be performed at Omaha Children’s Hospital.

Ethan learned to walk with the aid of a walker just four months after his first surgery with Dr. Fassier, and by the time he was two years old, he was walking and running independently.  

Now two-and-a half, Ethan is recovered from his summer surgery and walking and running again.  He continues Pamidronate, his “bone juice,” every ten weeks now.  He also does water and land physical therapy to help strengthen his muscles and bones.  Ethan has not suffered any fractures in more than two years.  

“Ethan was one of the younger kids to be rodded.  He has met all his milestones with these treatments, and has beaten all the odds, reports his father, Neel.

 “He’s an amazing little boy.  He runs, climbs, and enjoys most things a typical little boy his age enjoys and gets into,” Neel says.  Although, he admits, a less charming activity is whipping up the two family dogs—Scrubs and Susie-- into a frenzy and chasing them around the kitchen island!  He enjoys playing with his cars and trains and has a particularly keen interest in anything related to sharks. Bugs and worms rate a close second.  He also loves giving and receiving hugs and kisses.

Ethan also attends a pre-school several days a week, accompanied by an aide who monitors his activities for safety.  

The OI journey for the Desais is on-going.  Both Debbie and Neel are strong proponents of getting involved in OI support groups, exchanging information and keeping abreast of all current OI research.  They try to make a yearly commitment to get together with other OI families on vacation and encourage new OI families to seek out support from social media such as the Facebook OI Parents and Yahoo OI Parents sites.  They want their son to be seen as any other kid who just happens to have OI, rather than letting  it  define him.

The Desais also believe attending the biennial OI Foundation Conference is extremely valuable not only for the presentations and updates on OI, but also for the support it offers to families.  (The 2012 National Conference on OI will be held on July 13-15 at the Crystal Gateway Marriott in Arlington, VA.)

As a physician with a family medicine practice, Neel believes it is his responsibility to step up and raise awareness of OI and the treatments available. 

“Not all is doom and gloom when OI is diagnosed now. There’s a whole new outlook on how OI is being seen in the general and medical community.  However, more awareness and education is still needed, Neel emphasizes.  

“Being involved in the OI community is empowering.  We learn so much from each other, and our children deserve the best quality of life we can give them.”

Neel and Debbie are constantly reminded of their little boy’s amazing journey by a picture hanging in Neel’s medical office. It’s a picture of Ethan running along a beach with the following caption:

Nice running for a kid that wasn’t supposed to walk. :)

The Desais know that Ethan is just one example of the unbreakable spirit embodied with OI—“with some of Evil Knievel thrown in as well.”

To contact Neel or Debbie, you may email them at either drneel@hotmail.com or jordada@gmail.com.


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