Raise Awarenss for vEDS

Zebra Strong for The Ehlers-Danlos Society

I am raising awareness and funds for The Ehlers-Danlos Society. Together, even a small amount can make a huge difference! The Ehlers-Danlos syndromes (EDS) are a group of 14 heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Hallmark symptoms across all types are hypermobile joints, skin hyperextensibility, & tissue fragility. Each case is unique and severity may range dramatically, even within families.

Massimo Philip Mezzatesta

Dec 2000 – May 2016

Massimo’s Story

Author Sandra DiMeo (Mother)

One night after watching a baseball game my son complained his back

was hurting, said he thinks he may have pulled something, said he was going to relax and

see if the pain passes.

A couple of hours later my son complained it was getting worse and his left arm was starting to hurt.

And this is how it started…..

Once at the hospital… long story short my son was in a lot of pain, said he feels like his

Having a heart attack. Nurses did not believe him, said he is fine, said his vital signs are fine.

My son only wanting to lye down was told he needed to wait his turn and waiting time was 3 hours.

No one took him seriously.

My son was angry, said he just wants to go home and rest. My oldest son and I told him he should

Just wait, but he was embarrassed at this point and said he just needed to lye down.

After only being home a few hours my son couldn’t take the pain any longer, said his left arm is hurting along with his back and felt he was having a heart attack.

We rushed to the hospital located just across the street and right away a nurse on the new shift

Saw my sons complexion and how pail he was in the face and instantly put him in room 5 where I wheeled him in with a wheelchair.

In minutes my son was in a hospital gown and a male attendant was in to take his blood.

Once the needle was inserted into my sons arm Massimo started convulsing. I was holding his hand and yelled his name.

My son turned his head looked me in the eyes and all I remember was seeing the fear in my sons eyes.

I ran screaming for help! That’s when doctors and nurses starting running in….. Beeping machines, yelling, orders being called out …. Is all I remember till a doctor came up to me and said

They couldn’t save him, there’s no brain activity, his gone……

I walked into a hospital with my completely healthy 15 year old son and not even a couple of hours later I walked out with my son in a body bag.

No one knew why he died till the autopsy report stated Massimo died from EDS Type 4 known as vEDS.

If only they knew, if only there was a way a treatment maybe my son would have lived.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.
Please support me, and together we will overcome!