Re: Decision to go to NY - One more thing

[Guest guest]

Kathy's email brought goosebumps to my skin. Incredible!!!! She

reminded me of something that I neglected to write about.

MANY of our MAGIC RSS/SGA families see Dr. Harbison once a year in

January, and once a year at the Chicago convention. If they are on

GH, they often will see a local endo the other two times, and Dr. H

will work with that person. Some families work with their local

pediatrician only and don't see another endo.

Dr. H is very willing to work with families to figure out what is

financially feasible, and travel-wise, etc. Traveling to NY is NOT

for every family; and if you live outside the eastern US, it is

almost impossible.

So what do you do? The best you can. You find great specialists in

different areas, who are willing to email Dr. H when necessary.

You may have to still drive a couple hours for an awesome peds GI

doctor, and a different direction for a great endo. MAGIC has a

listing of physicians that other families have liked, and they can

look by geographia area for you. Don't hesitate to ask them!

> Hi Sheryl,

>

> we saw at least nine doctors in the Sacramento (CA) area over the

first

> three years of Willie's life. Although one ran the GTube Clinic,

she never saw

> the hypoglycemia. Two were endocrinologists and one a geneticist

and none could

> definitively say RSS. We walked into Dr H's office in NY with a

limp,almost

> -3 -yr-old and were recognized immediately for what we are:an RSS

family. Katy

> was there, looked at Willie and welcomed us. She showed us a

picture of the

> other kids at the convention and there were all Willie's brothers

and

> sisters! Dr Harbison put us on the right path so for me, her

shoes can never be

> filled. I always say if we win the lottery we're moving to New

Jersey. None of my

> friends with healthy kids understand that (or much else). We try

to see her

> once a year now at either the convention or in NY. On the rare

night that I'm

> not awake worrying about Willie, I've lately taken to worrying

that

> something could happen to Dr Harbison. In just over a year,

Willie has gone from 18

> lbs to 25+! She is incredible.

>

> Kathy (Jack, non -rss, 6, and Willie , RSS and not in the best of

shape

> today...Periactin, Zantac)

>

>

>