"A SuperHero Story,"
By Avram Joseph
If it takes two to have a child, and it takes a village to raise a child, how many will it take to save a child? One life, one child... My child.
You know the goosebumps you get from watching a depressing video about someone's child? A tear drops, you brush it off, and you quickly remind yourself how lucky you are that your child doesn't have whatever illness you just learned about...
I've forgotten what that's like.
My name is Avram Joseph and my 4 year old son, Kalel, has a rare disease called Mucopolysaccharidosis type II (MPS II) which affects about 1 out of 160,000 boys worldwide. MPS II is a terminal disease that progresses over time causing swollen organs, loss of hearing, loss of speech, and cognitive regression (to name a few) before the worse comes along; taking the a precious life at an early age (I still tremble when I say that aloud).
I met my wife, Monica, through a mutual friend in college back in 2007. Pretty unique story. We both grew up in Miami, FL but never met. She stayed near home after high school. I was attending college in Tallahassee. After meeting at a small gathering in Tallahassee, I couldn't wait to see her again. As summer vacation started, I practically spent every day with her thinking of things to do to keep her intrigued. Ice cream, restaurants, beach days, parties, anything that came to mind, she was my first call for invitation. As the summer came to an end, I had to make a big decision; go back to Tallahassee and finish school or move back home to Miami and continue my life with this beautiful distraction. Shouldn't be hard to figure out what my decision was. Over 10 years strong, 2 beautiful boys, 1 dog, and no regrets!
Then came April 29, 2016. Our lives forever changed. I wish I can say our lives changed for the better, but it's far from that. My wife and I were awaiting test results for what seemed like eternity. Results for a disease we knew nothing about. We couldn't even say "we've heard the name before". All we knew about this disease was the fact that we wanted no part of it.
After weeks of hope, prayers, and the inevitable suspense, the doctor called us into the room. My wife and I locked hands and walked in as a team.
I stared into his eyes and quivered, "Negative, right?"
The doctor bowed his head, turned to mom and said, "Repeat after me; this is not my fault".
I felt her hand squeeze tighter as I reached out to hug her. I felt my throat knot up, my jaws clenched, and my knees went weak. A nuclear bomb just went off inside and my heart grew heavy. Mom couldn't fight her tears, nor could I as they began falling from our faces like rain drops on a windowsill.
I took a deep breath and asked, "How bad is it?"
"Go home and enjoy your son", he said, "There isn't a less severe form for what your son has and currently, there is no cure."
The hardest walk of my life walking out of the clinic and headed towards both my kids and their grandmas. I just heard the bad news, now I have to speak of it so quickly?! I could barely walk let alone talk. Both grandmas knew, though. They saw our faces and they just knew. I tried, but I wasn't strong enough. I couldn't keep it together. My hopes and dreams for my son was just crushed by a disease that would take his life by the time he turns 12 years old, if not before.
There is a treatment, not a cure. Elaprase is a drug used to help slow down the disease progression. This drug would be administered to Kalel; 4 hours via intravenous, once a week, for the rest of his short life. Not a cure, but a treatment that would help break down the increasing levels of a sugar molecule known as Glycosaminoglycan’s (GAGs) that are causing all the damage in my sweet little boy. Although the treatment slows down the buildup in the body, it does nothing for the brain. How can a parent live a life knowing their child will cognitively regress progressively before their life is taken from them?!
Kalel knows nothing of what's going on, nor his little brother Logan (who, thankfully, is not affected). Ignorance truly is bliss and I see it every Thursday morning as they get excited to go to the hospital. More than anything, this is how I manage. Their smiles keep me going, keep me fighting, and most days, keep me from total breakdowns.
At night, when everyone's fast asleep, I sneak outside, jump into my vehicle, and scream. I lose it. I look up and ask, why? Why us? Why my family? Why my son?! I don't see a sign. I don't understand. It's like we've won a sick-twisted game in the lottery of life. I knew one thing; I couldn't sit around watching this disease progress, not without a fight!
So we started our own Nonprofit Foundation: MPS SuperHero Foundation Inc.
Why MPS SuperHero? My oldest son Kalel (4yrs.) is named after Superman. My youngest son Logan (3yrs.) is named after Wolverine. The purpose of the diagnosis finally became clear. The drive, dedication, and determination we have to save OUR son’s life will benefit the rest of the children who are affected, as well. We have taken the responsibility of becoming superheroes and will forever live by a code:
"You don't need Super Powers to be a SuperHero!"
Here I stand today, as a man, as a father, as a SuperHero. Most people won't ever meet their hero, but me, I'm raising mine. With love, prayers, and lots of hope, our biggest battle in life has just begun and we will NOT back down!!
-Avram Joseph
Vice President/Co-Founder
MPS SuperHero Foundation Inc.
www.mpsSuperHero.org
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support
By Avram Joseph
If it takes two to have a child, and it takes a village to raise a child, how many will it take to save a child? One life, one child... My child.
You know the goosebumps you get from watching a depressing video about someone's child? A tear drops, you brush it off, and you quickly remind yourself how lucky you are that your child doesn't have whatever illness you just learned about...
I've forgotten what that's like.
My name is Avram Joseph and my 4 year old son, Kalel, has a rare disease called Mucopolysaccharidosis type II (MPS II) which affects about 1 out of 160,000 boys worldwide. MPS II is a terminal disease that progresses over time causing swollen organs, loss of hearing, loss of speech, and cognitive regression (to name a few) before the worse comes along; taking the a precious life at an early age (I still tremble when I say that aloud).
I met my wife, Monica, through a mutual friend in college back in 2007. Pretty unique story. We both grew up in Miami, FL but never met. She stayed near home after high school. I was attending college in Tallahassee. After meeting at a small gathering in Tallahassee, I couldn't wait to see her again. As summer vacation started, I practically spent every day with her thinking of things to do to keep her intrigued. Ice cream, restaurants, beach days, parties, anything that came to mind, she was my first call for invitation. As the summer came to an end, I had to make a big decision; go back to Tallahassee and finish school or move back home to Miami and continue my life with this beautiful distraction. Shouldn't be hard to figure out what my decision was. Over 10 years strong, 2 beautiful boys, 1 dog, and no regrets!
Then came April 29, 2016. Our lives forever changed. I wish I can say our lives changed for the better, but it's far from that. My wife and I were awaiting test results for what seemed like eternity. Results for a disease we knew nothing about. We couldn't even say "we've heard the name before". All we knew about this disease was the fact that we wanted no part of it.
After weeks of hope, prayers, and the inevitable suspense, the doctor called us into the room. My wife and I locked hands and walked in as a team.
I stared into his eyes and quivered, "Negative, right?"
The doctor bowed his head, turned to mom and said, "Repeat after me; this is not my fault".
I felt her hand squeeze tighter as I reached out to hug her. I felt my throat knot up, my jaws clenched, and my knees went weak. A nuclear bomb just went off inside and my heart grew heavy. Mom couldn't fight her tears, nor could I as they began falling from our faces like rain drops on a windowsill.
I took a deep breath and asked, "How bad is it?"
"Go home and enjoy your son", he said, "There isn't a less severe form for what your son has and currently, there is no cure."
The hardest walk of my life walking out of the clinic and headed towards both my kids and their grandmas. I just heard the bad news, now I have to speak of it so quickly?! I could barely walk let alone talk. Both grandmas knew, though. They saw our faces and they just knew. I tried, but I wasn't strong enough. I couldn't keep it together. My hopes and dreams for my son was just crushed by a disease that would take his life by the time he turns 12 years old, if not before.
There is a treatment, not a cure. Elaprase is a drug used to help slow down the disease progression. This drug would be administered to Kalel; 4 hours via intravenous, once a week, for the rest of his short life. Not a cure, but a treatment that would help break down the increasing levels of a sugar molecule known as Glycosaminoglycan’s (GAGs) that are causing all the damage in my sweet little boy. Although the treatment slows down the buildup in the body, it does nothing for the brain. How can a parent live a life knowing their child will cognitively regress progressively before their life is taken from them?!
Kalel knows nothing of what's going on, nor his little brother Logan (who, thankfully, is not affected). Ignorance truly is bliss and I see it every Thursday morning as they get excited to go to the hospital. More than anything, this is how I manage. Their smiles keep me going, keep me fighting, and most days, keep me from total breakdowns.
At night, when everyone's fast asleep, I sneak outside, jump into my vehicle, and scream. I lose it. I look up and ask, why? Why us? Why my family? Why my son?! I don't see a sign. I don't understand. It's like we've won a sick-twisted game in the lottery of life. I knew one thing; I couldn't sit around watching this disease progress, not without a fight!
So we started our own Nonprofit Foundation: MPS SuperHero Foundation Inc.
Why MPS SuperHero? My oldest son Kalel (4yrs.) is named after Superman. My youngest son Logan (3yrs.) is named after Wolverine. The purpose of the diagnosis finally became clear. The drive, dedication, and determination we have to save OUR son’s life will benefit the rest of the children who are affected, as well. We have taken the responsibility of becoming superheroes and will forever live by a code:
"You don't need Super Powers to be a SuperHero!"
Here I stand today, as a man, as a father, as a SuperHero. Most people won't ever meet their hero, but me, I'm raising mine. With love, prayers, and lots of hope, our biggest battle in life has just begun and we will NOT back down!!
-Avram Joseph
Vice President/Co-Founder
MPS SuperHero Foundation Inc.
www.mpsSuperHero.org
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support
