Letter from

[Guest guest]

This is a letter that wrote to me and she wanted everyone on here to

know that her grandson lost his battle with CF. She is having problems with

getting it to post so I asked her if it was OK if I did. So here it is

hello deb,

i left mcesana a message that my grandson is an

angel now.. i tried to leave an update on him when he

was so ill but my messages just arent getting through

on cfparents yahoo groups that is the only group that

i belong to so i dont know what has happened.. i didnt

leave any bad messages..and it wasnt returned to me

or anything so i dont understand..but my grandson was

4 years old.. we went to orlando fl for his make a

wish trip and he got really sick while we were there

and had to be hospitalized while he was there. then we

asked could he please be brought back to arkansas so

the family could get there to be with him.. anyway he

arrived back by medi flight at 230 am on november 13th

and passed away at 830 pm on november 13th.. my son

who also has cf made it to the hospital cause that is

what my grandson taloen wanted was his mom and nana

and uncle daniel to be there.. it was very hard on all

of us..and it is still very hard on all of us.. i dont

know how long it will be before the pain eases up but

i know it takes time.. the holidays are the worst to

get thru..anyway i just wanted to let some of you that

i know that i have talked to several times on here

know what was going on.. he did get to fulfull that

wish but his biggest wish was to meet elton john and

sing tiny dancer with him.. anyway gotta go now so

talk to you later.. mary son 19wcf and grandson 4

wcf.. 4 other children wocf and 1grandson wocf and one

granddaughter i hope is wocf she has not been tested

yet just born.. see ya and thanks for listening.. mary