Fund-ROAR-ser for Frankie DePasquale

Frankie's Aunt Matalie here, and yes, the "M" is not a typo. I'm here to catch you

all up on our little dyno-mite man Frankie.

Many of you have watched Frankie as he has grown with us over the years, but

some of you may not be aware that Frankie has a rare form of

Spina Bifida called Sacral Agenesis (or Caudal Regression Syndrome.) It is a rare

birth defect occurring approximately in 1 of 60,000 live births. In Frankie's case,

he was born missing the vertebra L4 entirely and half of his L5. As a result, this

has affected the nerves that run to the bladder, bowel, kidneys and legs.

Unfortunately, the time has come with the news no one wanted to hear and have been afraid of for so long. Frankie's Neurosurgeon has decided surgery is needed immediately to preserve any function and to improve some aspects of his quality of life. The surgery will entail spinal cord untethering and draining a sack of fluid

that is believed to be putting pressure on the nerves. Frankie's surgery is

scheduled for June 27, 2022, at Akron Children's Hospital. He will be sedated in

the PICU for 2-3 days following surgery to allow the spinal cord to heal. From

there, he will be moved to another unit for 3-5 for recovery.

With our help, my goal is that this page will help decrease the financial burdens

they will face over the next few days, weeks and months. Tony and Erin will both be taking time from work, and they will have the expense of daily trips to and

from Akron. In addition, any other unknown expenses that may arise.

While the consequences surrounding his story are medically related, there is also a big life lesson within this story, my friends. This sweet boy has taught all of us

that no matter what we are faced with, to meet it with a love of life and with joy. A smile. A giggle. To beat those damn odds. To meet everything with strength and courage. I can't or won't pretend to know their daily struggles. There are some

things that I DO know. I know that as a parent, all you want to do is love and

protect your littles, and keep them safe. I also know that this little guy is a fighter and he is SO dang strong. And I know there is an awfully big Village behind

Frankie and this little family.

My brother Tony and his fiancee Erin are undoubtedly some of the strongest

people I have ever known. Frankie is also a very lucky little brother to have the

best big sister, Evelyn and big brother, Aiden, around! They have a long road of

recovery ahead, and with our help, we can show them a level of support that

allows them to focus on Frankie, and their family. Please keep Tony, Erin, Aiden,

Evelyn and Frankie in your thoughts as they navigate through this time.

You may also reach out to me directly if you have any questions and/or if you

would like to make a donation or contribution outside this Fundraiser. Tony and

Erin will be very busy, and their energy will be focused on Frankie. I will

post updates when Tony and Erin are ready to share them.

We love you, Frankie. Your attitude is the size of a T-Rex, little one.

Be well, all.