Ja'Aryn and I are leaving the RSS Group

[Guest guest]

In summary, Ja'Aryn isa 7 year old 7 month old african american girl

with multiple abnormalities including past bilateral

lymphohistocytosis behind the eyelids, present day problems with

proximal interphalangeal joints of fingers and toes which was not

present in previous evaluations. Poor growth. When they tried to

asses the findings in her it is difficult to place them in a

specific syndrome. Oh yeah, wow RSS Parents remember she was

diagonised with RSS at 3 months now there is no syndrome for my baby

oh WAIT don't stop reading this is good. They found a lady in

PAKISTAN with the same features as JaAryn wow now she could have

this FAISALABAD HISTIOCYTOSIS, over a month ago JaAryn was

diagnoised with scollois now that is no longer and RSS is no longer

my God why is it so hard for parents with special angels like ours

have to go through so many syndromes before they can decided which

one is the one for your child (ha ha) I had to laugh because now

that I have been on the listserve for RSS and it's only one person

with F.H. who will be my support besides GOD. Anyway thanks for

reading and if anyone else is out there with F.H. you can contact me

at freespiritedjack@... or www.marykay.com/JackieRobins.

Thank you family for being there for me through the years and a

special thanks to Ken for being there and providing me with your

strenght since 1990 when we met on the net. JaAryn height is

108.5cm and weight is 15.42 kg less than 5th percentile. But she is

going to alright. God Bless my RSS Family and I hope no one will

have to wait seven years before they find out that there angel is

not RSS.

Love and Prayers

Jackie and JaAryn

[Guest guest]

jackie and ja'aryn-

good luck and god bless the two of you!! ihope you will find the

answere you have been waiting for!!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " periactin, ght

genotropin(on hold until july), ADHD (possible), assmentry(left side

1cm), johnathon-11m nonrss

> In summary, Ja'Aryn isa 7 year old 7 month old african american

girl

> with multiple abnormalities including past bilateral

> lymphohistocytosis behind the eyelids, present day problems with

> proximal interphalangeal joints of fingers and toes which was not

> present in previous evaluations. Poor growth. When they tried to

> asses the findings in her it is difficult to place them in a

> specific syndrome. Oh yeah, wow RSS Parents remember she was

> diagonised with RSS at 3 months now there is no syndrome for my

baby

> oh WAIT don't stop reading this is good. They found a lady in

> PAKISTAN with the same features as JaAryn wow now she could have

> this FAISALABAD HISTIOCYTOSIS, over a month ago JaAryn was

> diagnoised with scollois now that is no longer and RSS is no

longer

> my God why is it so hard for parents with special angels like ours

> have to go through so many syndromes before they can decided which

> one is the one for your child (ha ha) I had to laugh because now

> that I have been on the listserve for RSS and it's only one person

> with F.H. who will be my support besides GOD. Anyway thanks for

> reading and if anyone else is out there with F.H. you can contact

me

> at freespiritedjack@y... or www.marykay.com/JackieRobins.

>

> Thank you family for being there for me through the years and a

> special thanks to Ken for being there and providing me with your

> strenght since 1990 when we met on the net. JaAryn height is

> 108.5cm and weight is 15.42 kg less than 5th percentile. But she

is

> going to alright. God Bless my RSS Family and I hope no one will

> have to wait seven years before they find out that there angel is

> not RSS.

>

> Love and Prayers

>

> Jackie and JaAryn