Aidan Joseph Silva, 2003-2010

Wednesday, November 23, 2011

In Today's News

Darren and Phyllis Sudman, who started Simon's Fund when their little boy passed away six years ago, wrote a great article for today's Philadelphia Inquirer. Aidan is mentioned toward the end. Please pass this along...

Article: Heart Screening Could Prevent More Deaths

Simon's Fund is making possible our December 3rd heart screening event, along with the subsequent screening that we're in the process of setting up for the 200 people on the waiting list.

Wednesday, November 16, 2011

Heart Screening Event is FILLED!

The heart screening event scheduled for Saturday, December 3rd in Downingtown, PA is FILLED! If you'd like to be placed on the waiting list or receive information about the next screening (Spring 2012), go to http://www.simonsfund.org/get-screened/register/ and sign your child(ren) up. We'll notify you as we get more information.

Thanks to all who have registered so far-- it takes courage to do this, and I'm proud of you! See you on the 3rd!

Friday, November 4, 2011

Register for the December 3rd Heart Screening Event!

Registration is now open online at http://www.simonsfund.org/get-screened/register for all youth between the ages of 5 and 19 for the heart screening event that will be held on Saturday, December 3rd from 8:30-4pm at Downingtown High School West, 445 Manor Avenue, Downingtown, PA. The event is FREE, although donations to Simon's Fund will be gladly accepted.

Simon's Fund, who is sponsoring the event, has found that approximately 1 out of every 100 children is found to have a potentially life-threatening heart condition. So far, 30 children out of 3,000 checked during the heart screening events hosted by the organization have been able to detect previously unknown structural or arrhythmic problems and are living with the knowledge and treatments that will save their lives.

As Aidan's mom, I can't emphasize enough the importance of taking advantage of this rare opportunity. If we had had such an opportunity before our son died, we may have been able to detect his heart condition and take measures to keep him healthy. Aidan, like nearly all other children who die from Sudden Cardiac Arrest each year, seemed to be in perfect health until the moment he collapsed. There was no warning for us. We had no chance. You have a chance to protect your children with this screening.

No one looks forward to these events, admittedly. Will your child be the 1 in 100? It's a scary, scary thing to think about, and it's tempting to not show up, especially on a Saturday when the weather might be beautiful and the kids have birthday parties and fun things to do. And, for the older ones, there's the explanation that you'll have to provide; the "Why are we doing this, mom?" I get that. It won't be easy. But it's much easier than paying the ultimate consequence. And the peace of mind will be SO GREAT.

So here's how it works: You'll sign up here and then you'll get an appointment time that works for you. You'll also fill out a health history questionnaire. On December 3rd, come with your family at your designated time. A nurse will take their vitals. Your child will be escorted to a patient table behind a privacy screen (parents are welcome to join), where he will be asked to lie down. A few sticky tabs will be place on the child's chest, arms and legs. A few teeny clamps attached to wires will be fastened to the loose ends of the sticky tabs. Your child will be asked to be completely still for about 30 seconds. And that's it.

If something shows up on the ECG (also called an (EKG), your child may get an echocardiogram (an ultrasound of the heart to check for structural abnormalities). Many of the teenagers you've heard about in the news lately who have died of a sudden cardiac event were found (after passing) to have had a cardiomyopathy, or enlarged heart or part of the heart.

ECGs detect approximately 80% of all potentially life-threatening heart conditions. Yet they're nearly impossible to order for your family if there is no known prior heart event in a family member. If you're lucky enough to get a prescription for one, it costs upwards of $90 per person to have done. And then there's the question of who's reading the printout-- which can be a huge factor in detection. At our December 3rd event, the very best pediatric cardiologists and electrophysiologists from A.I. Dupont Hospital will be reading your child's ECG.

So, sign up, and show up! And tell others to do the same. We're counting on you to help us keep kids' hearts safe.

See you on the 3rd!

ps-- The event is free, but please think about bringing a donation for Simon's Fund!

Monday, October 10, 2011

Heart Screening Update

The heart screening event that we had originally planned for October 22nd has been moved to Saturday, December 3rd, from 8:30-4pm at Downingtown High School West. All children ages 5-19 are welcome to participate.

An ECG will be performed on participants who have registered online before the event. The test takes a few minutes and is non-invasive and painless.

Of the 3,000+ hearts that have been checked through Simon's Fund heart screening events, about 30 have been found to need follow up testing for potentially life-threatening issues in children who have no symptoms and no family history of heart conditions.

Registration will open on November 4th at www.SimonsFund.org. Please help us spread the word!

Tuesday, September 13, 2011

Eleven Sudden Deaths in Twelve Days

And still, a year after we were drop-kicked into the stunning reality that kids' hearts do stop suddenly and without warning, more and more and more and more kids are dying...

What's it gonna take to get EKGs to be offered to every family for every annual well-child visit so we can prevent this from happening so often?

Why don't we have a national database of children who have died from sudden cardiac arrest so we can start to piece together what's going on?

See this news release:
http://myemail.constantcontact.com/PHW-News-Update--Eleven-Sudden-Deaths-in-Twelve-Days.html?soid=1101566562040&aid=fZdFaWjIYpI

More information on each of these cases is available at Parent Heart Watch's website.

UGH.