Human Factor: Family vows to live for dying boys

In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. This week, meet the Leider family, who had it all and then faced the most trying of times, only to end up helping others during their grief.

Love, marriage and a family! That was our dream, and we believed it came true.

Our family began August 23, 2006 with an amazing little boy, Jason Jeffrey, and then came our little prince Justin Jay, on February 25, 2009. These two little boys became our new love, a joy completely unimaginable. We hugged, kissed, played, read, giggled, tickled, and celebrated life like a normal family. Our perfect family, living out our dream, so we thought!

January 2011 our normal life became anything but. Our dream turned into the worst possible nightmare a parent could have. We received news that shattered our family as well as our life long dreams. Our perfect little boys were diagnosed with an extremely rare and fatal genetic disease known as mucopolysaccharidoses-2, also known as MPS II or Hunter‘s syndrome.

How could this be? How could both our sons have this fatal disease? Questions and fears ran rapid through our household!

“Why us?” “ Why them?”
“How could this be happening to our little boys?”
“Why can’t life “let them be little?”
“How do we LIVE?”
“Is this really happening?”
“How many good years do we have left?”

...and of course:

“How do we possibly even think of our life WITHOUT these little guys?”

Our world has been turned upside down. We no longer have the freedom to allow our 2- and 4-year-olds to just be little boys. Their lives have become doctor visit after doctor visit, MRIs, blood tests, surgeries, weekly four-hour IV treatments, going to the hospital, physical-speech- and occupational therapies, visits to North Carolina Medical Center every six months, and countless checkups, while we constantly seek family support and help with our 6-month-old little girl .

As parents you would think hearing the words “your boys hopefully will live to age 15” is the worst, but what leaves us unable to breathe is having to sit back and wait for the days Justin and Jason’s brain and body parts deteriorate so significantly they will lose all communication, and the ability to walk. The most horrific thing is the boys not being able to recognize their surroundings and ultimately not know who their mommy, daddy, and baby sister are anymore. That is what we consider just unbearable. This waiting game has left our family’s lives in complete turmoil.

Our hopes and dreams for our little boys’ future no longer exist. Jason, our super sensitive, lovey gushy, huggy mush, who loves baseball, fire trucks, and playing Dr. Jason, we thought - maybe a firefighter, possibly a baseball player, maybe a compassionate doctor - Justin our busy boy, never sitting still, always investigating how things work with a devilish smile…another baseball junkie who pushes cars all around the house...maybe an engineer, a scientist, who knows - maybe even a race car driver! All those dreams for our little guys' success has come to an end.

We no longer have time for dreams of what Jason and Justin will grow to be. Now, we place all our effort into keeping our little angels on earth, as protected, pain-free, and comfortable as possible for the remainder of their shortened life expectancy.

Constantly worried about how to make what is left of our children’s lives an incredible magical experience!

Why can’t life “JUST LET THEM BE LITTLE?”

How it all began:

Married, have two beautiful, energetic, little boys, a home filled with love and laughter, and are expecting a third child. You can’t help but think life is such a wonderful JOURNEY.

The phone rings one morning, it is your eldest son Jason’s preschool teacher. The basis of the phone call: The teacher’s concern with Jason’s performance and ability compared to other children his age. Trying desperately to help your little boy, you attend numerous appointments, being sent from one type of doctor to another. Then finally, one afternoon you reach the Doctor who knows what’s wrong. EXCEPT you are informed that your first born little angel has MPS, a rare genetic disease that has devastating effects on children, and a shortened life expectancy.

You listen to the doctor describe the disease - the effects, the outcomes - in absolute horror and disbelief. We sat there waiting for the but, or to hear something positive, but that was not the case, it just got worse and worse. We listened to the symptoms, our hearts breaking into a million pieces, not our Jason. How could this be? And as we sat and listened to more horrific details our hearts just crumbled knowing Justin, our second little love, looks exactly like Jason and has the same symptoms, oh god! Not both of them! What do we do; the waiting was unbearable.

Imagine: You take your little frightened 4-year-old in for multiple blood tests to determine what type of the this MPS disease he has, hoping and praying it is MPS I, a more treatable and possibly curable form of the disease. Your hopes are shattered when the results come back as negative for MPS I. After a series of more blood work, the results come back as positive for MPS II, a more degenerative form of the disease, affecting only boys, that has no known cure, and a life expectancy of 10 to 15 years of age. No cure! Life expectancy! Possibly eight good years! Unimaginable and unexplainable is the pain.

Imagine, you eldest son is 4 years old. Two weeks from having your third child, of which you do not know the sex, your youngest son is tested (our hearts told us Justin had it too), and the results come back as positive for MPS II as well. Your youngest son turns 2 years old the very next day.

Trying to remain calm for your unborn child, for your sons, and your husband, you attempt to go about life as normally as possible. You go to work, do the laundry, drive to preschool, clean the house, serve meals, make the children’s beds, essentially manage a life and take care of a house now filled with ruined hopes and dreams, filled with memories of innocence and youth, the walls covered in pictures of happy moments. You sit down and think, how many more of these moments will we have? You find yourself crying uncontrollably.

Jason Jeffrey, 4, Justin Jay, 2, and along the medical-emotional roller coaster is baby sister Jordan Kenna, 6 months; they now have a life that consists of a series of routine doctor appointments and six-month visits to the University of North Carolina Medical Center. Why UNC Medical Center? This is where the renowned MPS expert Dr. Joseph Muenzer is based. After a long meeting with Dr. Muenzer, he had requested that we bring Jason and Justin down to UNC every six months to evaluate progression or regression of the disease. Dr. Helio Pedro, Chief geneticist out of Hackensack University Medical Center, sees the boys weekly for their the four-hour intravenous Enzyme Replacement Therapy. The purpose behind the treatments is to reduce the swelling and destruction of internal organs, but cannot help the brain, which ultimately will stop functioning correctly, and shut the body down.

Our once normal life has become anything but: Every day is heart-breaking, dream-shattering, emotionally draining, and the watching and waiting is unbearable... a life I hope no other parent should ever have to experience.

But we have to LIVE. Live for our little boys, and baby girl!

We vow to give them the most love and joy we possibly could squeeze into the short period of time we have left on earth with them, to do everything possible to bring smiles to their beautifully innocent faces NOW, leaving Mommy, Daddy, Jordan Kenna and the rest of Jason and Justin’s loved ones with MAGICAL MEMORIES to hold on to as we someday face the challenge of surviving without them.

CHERISH EVERY MOMENT!!!!
Our Journey Continues!