Raising money for RSS division of Magic

[Guest guest]

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@...

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