Re: Raising money for RSS division of Magic

October 4, 2004

,

Awesome letter! Do you mind if I copy some of it for our letter?

Good luck with your fund raiser! I am thinking about making our walk

on Oct. 30 (when the businesses here have candy out for the kids) and

taking our sheets for donations with us to each business we encounter

on the square!

Still don't know for sure as our lives are turning flips at the

moment!

Carmen, Mom to Storm age 9, 49 inches, 53 pounds

October 4, 2004

Hi Carmen,

Please copy and paste away - and anyone else who wants to do the

same. It's all for a good cause right?

>

> ,

> Awesome letter! Do you mind if I copy some of it for our letter?

> Good luck with your fund raiser! I am thinking about making our

walk

> on Oct. 30 (when the businesses here have candy out for the kids)

and

> taking our sheets for donations with us to each business we

encounter

> on the square!

> Still don't know for sure as our lives are turning flips at the

> moment!

> Carmen, Mom to Storm age 9, 49 inches, 53 pounds

October 4, 2004

WOW - your letter is SOOO much better than mine! I wish I

had it a month ago! I am saving it so we can cut and paste from it

for future fundraisers, if that is OK with you? Fabulous letter!

>

> Hi Everyone,

>

> Thanks to all who responded to my post about the zevex pump. I

think

> I need to insist on a new one as I think if they've been out to

> numerous houses, God only knows what abuse they've been through.

>

> Anyhow - onto the " Walkathon " for RSS division of Magic.

S.

> recently posted that only 28 or so packets have been requested

from

> Magic. If this is still the case, would the members of this

> listserve who are unable to do the walk consider sponsoring those

of

> us who are doing the walk?? At the risk of being " cheeky " , I'm

> copying and pasting my begging letter in the hopes that more money

> can be raised to benefit the goals of this fundraising effort.

>

> Hope to find the time to post more stuff soon. Hi to everyone we

> know. We think of you often.

>

> The letter:-

>

> Howland

> 29 Summer Street

> Wakefield, MA 01880

>

> vhowland@c...

>

> October 3rd, 2004

>

> Dear -------

>

> Jillian and I are embarking on a 10.5 mile walk by the end of this

> month to raise money for the Silver Syndrome (RSS)

division

> of the Magic Foundation - an organization dedicated to help

children

> born with growth disorders.

>

> My daughter Jillie age 2, has RSS. Children born with RSS are very

> small and weak, have no interest in eating, have gastrointestinal

> problems and have issues with low blood sugars. They also look

> different. They have relatively large heads but small triangular

> faces with recessed lower jaws, have some form of assymmetry, have

> short incurving pinkies and are always very short. It is a form of

> dwarfism. Although they are born with a normal brain, long term

low

> blood sugar caused by poor food intake can effect their brain

> development in the long term.

>

> RSS children usually go through multiple painful tests to find out

> why they are not growing and what is wrong with them. Often, the

> parents of these children are " accused " of not feeding them

properly

> by those in and out of the medical community. I have met parents

who

> have had the Department of Social Services (DSS) show up on their

> doorstep because someone believes their child is being neglected.

>

> If and when they are diagnosed with RSS, many pediatricians will

say

> that there is nothing that can be done to effect their growth and

> probable learning disabilities. This is NOT true. With agressive

> feeding, appropriate treatment of gastointestinal issues and the

use

> of growth hormone, these children can grow and become normal,

> healthy adults and lead full normal lives.

>

> The RSS division of " Magic " needs money to educate those involved

in

> the life of an RSS child about life altering treatment

> options. " Magic " provides information to families and physicians

via

> a quarterly magazine and an impressive library of articles from

> around the world to its members. Magic hosts a yearly 3 day

> convention in Chicago for families of children with growth

> disorders. The convention allows exchange of information between

> families and from world experts on the different growth disorders.

> Magic also assists families fight insurance company who deny

> appropriate treatment for their children. Inability to pay for

> membership or attendance to the convention is absorbed by Magic.

>

> Jillie and I will be doing our walk in the last week of October.

We

> will be walking around the lake in Wakefield 3 times. Because

Jillie

> is accompanying me, we have to chose a day that will not be too

cold

> as she is weak and prone to infection.

>

> I hope you can support our efforts to help children like Jillie

> grow. If you can, please send a check made out to THE MAGIC

> FOUNDATION to me at the above address. Remember, children have a

> short time to grow and a lifetime to live with the results.

>

> Very best wishes,

>

> Howland

October 4, 2004

victoria i though your letter was great. it made me cri as i was one of those

parents that had to fight for the same thing you put in your letter i think i

might incloud that in jacob letter as a way for people to see was the money and

info could do for so many

cara mom to jacob

Salem wrote: