Hear From Jakeb, 14 years old                                    

Let me introduce myself:  my name is Jakeb Smith and I am a 14 year old who was born with ARPKD.   I live in Brownville, NY.  Over the years, my parents have taken me to see many doctors in several different states.  My experience has been that most doctors I’ve seen talk to my parents about my condition like I’m not in the room.  I often leave with questions unanswered.  Either because their answers are vague or they answer in terms I don’t understand.  Just a few weeks ago my family and I participated in the ARPKD/CHF study at NIH.  I found the doctors there to be very different.  Dr. Gunay was very informative and included me in all conversations.  She explained things so that I could understand and always asked if I had any questions.  I found this to be the same with not only Dr. Gunay, but also the nurses and the other doctors who performed tests.  The ultrasound technician (I had to ask my mom for that term) was great!  She explained what she was seeing as she did the ultrasound.  I was also surprised at some of the tests that were done.  I had never had an EEG (again, from my mom) or lung test done.  They did an IQ test, an eye exam, and a heart ultrasound.  I usually just get blood drawn and maybe an ultrasound of my kidneys. I felt like I knew exactly how I was doing by the time the week was over.  Also, it was great to have a playroom right across form my hospital room.  There was a computer with internet access and GameCube and PS2.  The Children’s Inn was not like a normal motel.  It was like a home. It had a living room, kitchen, game room and a computer room.  I got to meet a lot of other kids too.  My dad was able to keep up with his business in the business center.  We also had a chance to see Washington DC on the last day of the week.  It was only a 30 minute drive.  We got to see the Air and Space Museum (the IMAX was awesome!), Lincoln Memorial, war memorials, the Washington Monument and the White House.   I hope everyone who reads this considers going to NIH.  Not only does it help you but it helps everyone with ARPKD. 

Note from Mom:

Jakeb sums it up pretty well.  I must say that when we left NIH we had a very clear picture of where Jakeb was in the progression of this disease.  Never have we felt like this after leaving a doctor’s visit.  I would like to add that having participated in other research studies, this is, by far, the best and like no other.  The information that is being gained by this study will help all of our ARPKD children.  The more participants that are involved the more knowledge that will be gained.

Lisa Smith