PAY IT FORWARD for PKS kids and their families

This is an open letter to all Rainers and people who read the Rain. 

If you can assist Andrew and his family by simply voting, please take the time.  This is very important not only to the Schmidts but others facing this debiliating and enormous problem. 

I appreciate your assistance.  And thanks in advance. 

Hello-

I am writing as we need your help.  We have a 5 year old little boy named Andrew.  Andrew was born with not one but, two rare genetic syndromes.  The first is Beckwith-Wiedemann Syndrome which occurs in 1 out of 15,000 births.  It is not genetically passed in Andrew's case, but for 5 years this diagnosis left us very hopeful as these kids typically have initial delays but later reach most developmental milestones and typically live a healthy, independent and full life.  The second syndrome is called Pallister-Killian Syndrome.  This was recently diagnosed in Andrew via a skin biopsy December '09.  This syndrome is extremely rare, approximately 200 known WORLD WIDE!  And is very difficult to diagnose.  We have learned since this diagnosis that the severity of delays Andrew has demonstrated is the normal for these children.  Most of the traits are traits Andrew possess such as deaf/blind, profound low muscle tone, hernia's, seizures, short arms and legs, small ear canals, turned up nose, sharp heart shaped lips, coarse facial features, severe developmental delays and mental retardation.  This is to name a few.  30% of these children end up walking and most are non-verbal.  Andrew is 5 and is not walking, talking, crawling, feeding self, dressing self or toileting self.

What I am asking of you today is that PKS has a foundation that has applied for a grant through Pepsi to receive 25k!!  This money would help off set expenses for families that will be attending the PKS Conference set this June in NJ.  We hope to get up to 30 families from all over the world together under one roof.  How the grant will be earned is by people voting for the cause and the top 10 causes to receive the most votes will be granted the 25k each!!!!  It doesn't cost you anything!!  There are no strings attached!  No junk mail sent-it just takes a few seconds of your day until the April 30th.  Currently we are ranked 82nd and we need to get to the top 10.  This will only be done by spreading the word and getting as many people out there to vote.  Because PKS is not known of, we do not have a large base to draw from.  It is our job as parents to be the voice right now and help spread the message.  So, thank you for taking the time to read this.  Please pass this on to any family, friends, co-workers as your vote WILL make a difference and potentially help families learn how to properly care for our special children.

Here is the link:     http://www.refresheverything.com/pkskidsfamilyinvolvement

You will need to fill out your name initially, but after that you type in your e-mail daily and write PKS in the search and it will ask you to vote and say yes!!

If you have any questions, please don't hesitate to call or e-mail me.

Thanks so very much:)

Nicole and Paul Schmidt- parents to Andrew

Lindsey and Hannah-sisters:)

schmidtykid3@izoom.net
763-262-2092
763-482-9284

 

 

 

Suzanne McLaughlin

Sabinske & Associates, Inc.   612-202-0225    mclaughlinhomes@gmail.com

Visit my facebook fan page McLaughlin Homes 

People who work hard get lucky more often. - Donald Trump