Gift boxes for grieving parents donated to Upstate Golisano Children's Hospital

October 9th marks Sonny Jude's angelversary date.  2 years ago I left Upstate Golisano Children's Hospital a different person, navigating emotions that I have never experienced or had to battle before.  When I donate these boxes, I create them with so much love and intention for the parents who receive them, knowing that they'll face the same devastating journey I'm on.  I'm so thankful for the staff at Golisano and everything that they do for the children and families.  I also am so grateful for all of you and your constant support and donations.  This year with all of your help I was able to CPR certify 11 more people (23 total), donate to SADS Foundations, order TWO Sonny buddy benches (one is installed so far!), and DOUBLE the gift boxes for bereaved parents, 45 boxes in total.  October 9th is the day that Sonny moved on from this earth- I would have moved mountains if it meant he could stay- so instead I will continue moving mountains to make sure his name and his legacy continues. Thank you, thank you, thank you!

Buddy Bench Donation at Immaculate Conception School

Thanks to donations, I was able to donated a buddy bench to Immaculate Conception School.  This fall would have been the start of Sonny's first year in pre-k at IC.  Immaculate Conception was so kind to accept this donation, and it was placed in the pre-k playground.  On October 6th, the school held a blessing of the bench.  I was able to see what Sonny Jude's class would have been.  Thank you to all at IC, and thank you again for your donations and support, which keep Sonny's legacy alive!

National CPR Week

On June 8th, The Sonny Jude Foundation sponsored 11 more people to be CPR certified!  During CPR certification you learn how to handle situations that could save a life.  I am so proud of everyone who has gotten certified.  The SJF has now sponsored 23 CPR certifications!  A special thank you to our amazing CPR instructor, Dannielle!

2nd Annual Pancake Fundraiser Succes

The 2nd Annual Pancake Breakfast Fundraiser had such an amazing turnout!  With all of your support we raised a little over $2,000!  Thank you to all who came, donated, and supported!  The kids had so much fun creating sun catchers, there were tons of awesome gift baskets donated by such kind businesses, friends and family, and of course stacks and stacks of pancakes (one of Sonny Jude's favorite foods)!  With the donations $200 was sent to SADS Foundation and the rest will be used to fund CPR certifications, gift boxes for bereaved parents, and soon to be buddy benches!

2nd Annual Pancake Breakfast Fundraiser!

Join us February 11th for our 2nd annual Pancake Breakfast Fundraiser!  It will be held at 108 Silver St. in East Syracuse.  It begins at 8:30am and runs until sold out!  Funds raised will be donated to SADS Foundation and  The Sonny Jude Foundation.  SADS Foundation helps families effected by sudden arrhythmia death syndromes.  The Sonny Jude Foundation sponsors CPR/AED classes and advocates for bereaved parents.  We hope to see you there!

Sonny Jude Comfort Boxes for Bereaved Parents

October is a tough month because it is the month that Sonny Jude passed away.  To honor Sonny and honor him during the month of October, I created gift boxes for bereaved parents who have to leave the hospital without their child.  I was able to work with Regina, one the Child Life Specialists at Upstate Golisano, she helped coordinate my donation. 

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The gift boxes are curated with items that I appreciated after losing Sonny, items that helped other bereaved parents and items that I wish I had.  Items in the boxes include, a candle holder, a sun catcher, a journal, a small box to hold a lock of their child's hair, a "mom of an angel" and "dad of an angel" pin, a book to help children understand grief, called The Sad Dragon, Willow Tree's Angel Embrace figurine, and a craft to memorialize their child's hand print.

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While I pray no one needs this box, I hope those who do receive it are offered a beacon of hope. Even with the amount of support I received after Sonny died, I still felt so isolated and alone, because no one can possibly understand what you’re going through unless they’ve experienced child loss too. 

Sometimes children die and that’s a fact, sadly…but it needs to be talked about. Grieving parents are living their worst nightmare. As a support person, the least we can do is acknowledge the pain they’re in, and help keep their child’s legacy alive.

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Thank you to Charlene (@hazels_light) for her donation of her handmade sun catchers! Another thank you to Bebe (RemindMeOfYouStudio) for her donation of the pins.

Thank you to Regina at Golisano, and thank you to all the Child Life Specialists and PICU nurses for doing what you do!

SADS Awareness Month

Repost from the SADS Foundation Instagram:

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Each year in the U.S., approximately 360,000 Americans die suddenly & unexpectedly due to cardiac arrhythmias.

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Here at SADS Foundation, our job is to save the lives & support the families of kids and adults with these genetic heart conditions --and that's why this September, we're celebrating SADS Awareness Month.

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This is an opportunity for us to bring awareness to SADS conditions, and help our friends, family, and communities learn more about these inherited arrhythmia conditions.  Knowledge is power, and saves lives!

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We have a lot of easy ways to participate through the month.  From joining our Billboard Campaign to following the easy weekly engagement calendar, help us make a difference at the link in our bio.

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​https://sads.org/

National CPR Week: SJF Hosted CPR Class

The first week of June is National CPR Week!  In honor of National CPR Week, The Sonny Jude Foundation sponsored it's first free CPR/AED Certification class.  We had such a great turn out for our very first sponsored class.  Thank you so much to our CPR instructor Dannielle and thank you to Diane at The Silver St. Event Center!  We are so proud of everyone who came out and got certified.  Going forth with this skill you should feel empowered.  You never know who's life you could save!

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Our goal is to hold more of these free CPR classes, so please check back for details on upcoming classes! 

YMCA "Sonny" Primtime Room

Going to the Y was routine every morning during the week.  Lyla and Sonny always enjoy playing with the staff, new friends and all the different toys.  My last memory of Sonny at the YMCA was watching him joyfully ride through the hallways on the big red 6 seater stroller. The Hal-Welsh YMCA of Fayetteville has been so kind since Sonny Jude gained his angel wings. Sending care packages, cards, phone calls and emails to check in, and eventually supporting the foundation by purchasing our Sonny Jude Foundation t-shirts.  One of the most special things that the staff of the Fayetteville Y did was include Sonny in the updated primetime baby area, by painting a big yellow sun on the wall. Now that we've started assimilating back into routine, Lyla is always excited to see the 'Sonny sun' before she goes into her play area.  It warms my heart to know the impact my sweet boy made on so many people.  It's also very heart warming to know how many people care about my baby boy, as well as my family.  Thank you again to the Hal-Welsh and especially the childcare staff!

Sonny Jerseys for Upstate Elite Soccer Academy

So much appreciation for the the support and the love that comes from the team and families of Upstate Elite Soccer Academy. The Sonny jerseys are one of the most thoughtful ways of keeping his name in the present!

Sonny Bracelets at Baldwinsville Schools

Thank you so much to B’Ville cheer team for wearing our Sonny Jude bracelets! Keeping Sonny’s name alive is so special to me and I’m forever grateful for everyone’s support! Bracelets are now available for $2 - proceeds go toward future SJF projects!
 

Pajama Day Fundraiser at Immaculate Conception

Thank you to everyone at Immaculate Conception school! The school had a $1 pajama day and raised $389 toward the American Heart Association in honor of our sweet Sonny Jude!

Pancake Breakfast Fundraiser for SADS Foundation

The Sonny Jude Foundation's first ever event!

February is Heart Health Awareness Month! To bring awareness to heart health, specifically Long QT, the syndrome that Sonny Jude had, we hosted our first fundraiser, raising over $2,000 for The SADS Foundation!

SADS stands for sudden arrhythmia death syndrome.  Among many other great things, this foundation helps connect families effected by arrhythmia syndromes, with researchers. Being that Sonny Jude had a long QT mutation, a VUS (variant of uncertain significance), there was not much information available on what type of significance this gene held.  My hope for the future is that there will be more research on the different variants of Long QT.  SADS connects families affected by arrhythmia syndromes with researchers, among many other great things.

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Click here to learn more about The SADS Foundation.

February is Heart Health Month!

Worldwide, cardiovascular disease is the leading cause of death, killing 17.9 million people every year. While often thought of as one illness, heart disease is actually an umbrella term that covers a range of heart conditions. It includes diseases of the blood vessels, including coronary artery disease (CAD) and peripheral artery disease (PAD); abnormal heart rhythms, or arrhythmias; heart defects you’re born with, or congenital heart disease; and the thickening or enlarging of the heart, a condition called cardiomyopathy.

Sonny Jude had a genetic heart condition called long QT, which is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. Sonny’s diagnosis also had a VUS (variant of uncertain significance), there was not much information on his specific gene.

National Heart Health month is all about bringing awareness to heart disease and doing what we can to protect ourselves against it!  I encourage everyone to read this article from Everyday Health to learn more about heart disease, understand symptoms, treatments and prevention!