Musings & Events.

Hey Friends!!!


We really need to be better about posting on Seth's blog but let's face it - life is BUSY! I thought Id do a quick event update and also share a few thoughts with you on this glorious Tuesday morning!

First off - Seth is turning 3!!! I cant believe it's been almost three whole years since I witnessed the birth of this beautiful boy - and what I three years it's been! In honor of Seth's big day, we are having a ColdStone fundraiser on June 20th. This will be held at the same shop as it always is, at Val Vista & Baseline in Gilbert.We will post a big announcement & details as the day approaches but for now - mark your calendars!!! 


Okay, next. Ramblings.


Ive been thinking a lot lately about CMV. Being pregnant again with our 6th baby of course brings about thoughts of all the risks and scary things that can happen to a baby in utero - CMV being one of many viruses that can pass through the placenta and one of many many things that can go wrong. 


Ive really noticed over the last few days that there is a lot of fundraising going on for things like autism, cerebral palsy, epilepsy, etc. Millions of dollars have been raised to either research a cure for these ailments or to simply provide help to make life easier and more comfortable for those suffering with these things. That's amazing! It beautiful to see people giving up their own time & money to help the plights of others. The question milling about in my mind is this: What if we could STOP these things from happening? Are we spending all of our time and money trying to fix something that could be prevented entirely?


Each year, at least 30,000 children (1 in 150 in the US) are born with congenital human cytomegalovirus or cCMV. Most babies go home from the hospital with no indication whatsoever that they have been infected with this devastating virus in utero. Most will never show symptoms at all. But maybe they do. Maybe a year and a half down the road, they make it onto the autism spectrum. Maybe at age 2 they develop epilepsy. Maybe they simply have ADD or hearing loss or have severe learning disabilities. CMV is the number one cause of birth defects and physical as well as mental impairments. and yet you would never know your child was infected with CMV in utero unless testing was performed AT BIRTH. Unfortunately, we dont do that here. A simple cheek swab or urine sample would suffice, but because there is no vaccine and no way to prevent CMV, it's deemed pointless to do that kind of research in the US.


The number of known CMV cases each year is huge. It's startling, really. It could be the major cause of autism, CP, epilepsy, hearing & vision impairment, and a host of other things that plague our children - and adults - every day. Yet, most people have no idea what CMV is. We have to raise awareness. We have to get funds flowing in for CMV research. The only way to stop this virus is to find a vaccine. The only way to find a vaccine is to fund research - and that is just NOT happening for CMV.


If I was a famous celebrity with a CMV baby, the whole world would know about it. The whole world would empathize, be on alert, and throwing money at this cause. But Im not. Seth isnt the child of a famous woman, but of a normal girl who happens to be my best friend. He's is still worth it. All of our children are worth the time, effort, and money it will take to raise awareness and - eventually - bring about a preventative vaccine for CMV. 


For lots more information, please visit www.stopcmv.org . Donate if you are able, and spread the word - facebook it, post it on your blog, buy a Stop CMV bracelet and tell everyone you see what it's about. Help us protect the children of our future by stopping this virus in it's tracks.


*Please note: Im not trying to say your child is autistic or has CP or anything else because of CMV exposure in utero, so please dont try to lecture me about MMR vaccines and chemical exposures and oxygen deprivation. I know enough about all of those things. A link between congenital CMV and autism was discovered & noted as early as 1991...why isnt this information out in the public area? This is what Im asking. This is why we need to raise awareness immediately. CMV can directly account for every single disability that is not chromosomal or genetic - which to me, warrants a hell of a lot more research, right now.


Thank you for being a friend to Seth and a supporter of this precious boy & his family! You are all so very loved & appreciated!


Blessings.
~LISA

What A Success!

Last night was our highly-anticipated Hunger Games for Seth movie night! And we are all so HAPPY to report that it was a complete success! We had a blast hanging out with friends, seeing the movie (which was AWESOME) and raising money for Seth as well as awareness for cCMV.

Below are some photos from the evening - such a handsome crowd!

And we are SO very pleased and excited to tell you all that we brought in a whopping $1270.00 from this one event! THANK YOU to everyone who came out and showed your support, spread the word, bought raffle tickets, donated money, and prayed for the success of this fundraiser!

~ LISA

Hunger Games

Harkins Chandler Crossroads

202 South and Gilbert

March 23rd at 7:00pm

Please if you are going to see the movie please come and see it for Seth! Tickets are 20 dollars each and will go to help raise money for us to go to San Francisco to the CMV conference in October, video monitor for Seth, therapy needs and toys. Thanks again for helping out our precious little boy!

Please contact me through FB or email if you would like to purchase a ticket. Email address is: mmarinello3@mac.com

Sorry its been so LONG!

We finally got his new bed at the end of October! Thank you everyone that came out to ColdStone and helped raise money so that we could get him a bed and keep him safe. It is amazing and a huge piece of mind for Mike and me. If I need to get something done and can not keep an eye on him I am able to put him in his bed and he can play in there and crawl because it is big enough. I am able to put toys in there and leave his door open and he just plays until I can get him out. It has been amazing! The night we put it together it took FOREVER! My dad came over so that he could help Mike do the bed and they started around 6pm and then by 10:30pm they headed home because my dad needed to be at church early so he needed to get to bed so Mike and I decided to just try and get it done and we did finally! We finished it around 12:30am and Seth got to sleep in there for the night :) Here are some picture of the finished bed!

Here is Seth inside his new bed.

He looks so tiny in his big boy bed!

So we decided to take the mattress that he use to sleep on and the gate that we bought to keep him in one place and put it in the living room so that he has a place to also play when I cant hold him or watch him. In this house we call it the crazy cage :)

Water Walker!

Two weeks ago, we took our annual Finney/MacCallum/Marinello trip to Palm Springs. We all knew this was going to be such a fun vacation for Seth because he LOVES swimming! However, just days before we were to leave, Seth's Water Walker - the device we ordered to allow him to swim without his face in the water - had not arrived. After calling the company from which we originally ordered & finding out they had no order & couldnt rush deliver, we called the manufacturer. She happily shipped the Water Walker 2-day and we had it Friday before we left! Seth loved it! He spent hours just floating around the pool - or being pulled, spun, bounced, and dragged around by any of us adults or our crazy group of kids. Here are some pics of him using the Water Walker - you wont be able to stop smiling when you see how much fun he is having!

Thank you again to everyone for all of your support, donations & prayers!

Help...and Intro

Hey y'all. We thought it was time for a little intro...my name is Lisa, and I do the writing for the Funds For Seth blog. Seth's mom, Melissa, is my best friend and for all intents and purposes, my sister. I've been there since the day Seth was born - the second, to be more accurate - and have watched this family go through all of the peaks & valleys of CMV. Seth is a precious, beautiful gift to me and my family & Im so thankful that I have the opportunity to help him & his family by telling his story and helping to organize and keep track of the every day goings on of Funds For Seth!

That said....

We very much need your help. Recently, Seth has started to be able to bear weight on his hands, ie. a crawling position. This is fantastic as prior to this, he could only hold himself up on his elbows/forearms! However, this has also posed a bit of a threat to his safety when in his bed at night. He now attempts to launch himself forward - and this boy is strong. Two weeks ago he gave himself a black eye when he hit his face on the bed rails. He is also quite tall and only going to get taller, so one day he will most likely launch himself right out of the bed! This is all compounded by the fact that he cannot see, so he has no idea where he is going - he only know this is a fun thing to do and he enjoys the self-propelled flying forward.  So, priorities have changed and the Courtney Bed is now in the top position.

Insurance will not cover the bed. If we are raising the funds on our own, the maker of the bed will do it for $4000 plus $195 shipping & handling. We are so blessed to have the $2000 half-payment required for production of the bed to begin, which was sent to CYR Designs on Monday.  We have an additional $1000 in the bank and about 8 weeks to raise another $1000. So...we are asking for your help. I know so many of you have donated already, whether via The Ortiz Family Foundation or by standing in line & purchasing ice cream at a ColdStone fundraiser. If you have the ability, Im asking that you would consider donating yet again, so that we can get Seth his bed...his parents need the peace of mind as they sleep at night, and Seth needs to be safe & secure - and NO MORE BLACK EYES!

Please consider making a tax -deductible donation through The Ortiz Family Foundation - just click the paypal button in the top left corner of this page. As always and most of all, we covet your continued prayers for sweet Seth!

Thank you.

Another Fundraiser! And Another Update!

Join us PLEASE for another opportunity to help us raise some "Funds For Seth"!!!  Last month's turn out wasnt the greatest - help us make this month's fundraiser a success! On Wednesday, July 13, Visit the following ColdStone Creamery locations between the hours of 11 am and 10 pm and say "I'm here for Seth"! Twenty-five percent of all purchases will be donated to Funds For Seth!

ColdStone - Gilbert
3641 E Baseline Rd Ste Q101
Gilbert, AZ 85234
This is on the SE corner of Val Vista & Baseline! It's tucked away in the lot but keep looking!

ColdStone - Scottsdale
14858 N Frank Lloyd Wright Blvd Ste 165B
Scottsdale, AZ 85260

Thank you for your efforts up to this point! we have been able to purchase Seth's vestibular table (instead of the chair) and an awesome device for the water which will allow him to be in the pool, have fun & be safe! Swimming is one of Seth's favorite things to do but with very little upper body control we spent a lot of time just trying to keep his face out of the water....with the Water Walker, he will be able to truly enjoy his time in the pool as well as work to gain strength, balance & coordination as he plays. It will also very likely be used when he begins his water therapy!

None of this would be possible without your support & prayers - please keep them coming! And we will see you on Wednesday at ColdStone...remember to say "IM HERE FOR SETH"!