Baby Shane, After Completing His Bucket List in the Womb, Passes Away Peacefully

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Even the briefest of lives can have an impact on the world.

Baby Shane Michael Haley was born at 2:25 am on October 9th, according to the Prayers For Shane Facebook page. He died just a few hours later.

Shane was born with a terminal birth defect called anencephaly, where the baby is born without parts of the brain and skull, according to The Center For Disease Control and Prevention.

The Mighty previously covered the beautiful way his parents reacted to this sad news– they made their unborn child a baby “bucket list.”

Parents Jenna and Dan Haley decided to spend Jenna’s pregnancy showing their unborn son the world. They visited the Empire State Building, the pier in Wildwood, New Jersey, the Statue of Liberty, a Zac Brown Band concert and more, ABC reported.

Then, at 6:15 in the morning on October 9th, Shane passed away in his mother’s arms.

Shane spent his entire life in the arms of people that loved him unconditionally,” read a post on the Prayers For Shane Facebook page. “And I don’t think you could ask for a more beautiful life then that.”

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The Beautiful Way This Couple Responded to News That Their Unborn Child May Die

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Jenna and Dan Haley expected to spend a lifetime taking their soon-to-be son, Shane, to see and do all their favorite things. But, after their baby was diagnosed with a  fatal condition making it unlikely for him to survive long after his birth, they decided to make the most of the precious time they have with him.

Shane Michael Haley, who is due next month, was diagnosed with anencephaly two months into the pregnancy, according to the Prayers For Shane Facebook page.

Anencephaly is a serious neural birth defect where a baby is born without parts of the brain and skull, according to The Center For Disease Control and Prevention. About one in every 4,859 babies in the United States will be born with this condition, and almost all of them will die shortly after birth.

Knowing this, the Haleys decided not to waste a single moment of the little time they’ve been given with their son. They made a bucket list for Shane and created a Facebook page for friends and family to follow them on their adventures. In just over a month, the page has already gained nearly 170,000 followers.

“Shane has already proven to us that each day must be lived to the fullest and that is exactly what our little family is doing,” the page reads.

Shane’s bucket list contains all sorts of sights and activities that his parents wanted to be sure to share with him, including visiting the Empire State Building, the pier in Wildwood, New Jersey, and attending a Zac Brown Band concert, ABC reported.

 

“Most families wait until their baby is born to start making memories and traveling to places with them,” Dan Haley told the outlet. “We knew that our time with our son could be very limited, so we wanted to make the most of the time that we had with him.”

 

The young couple has demonstrated truly stunning courage and positivity in the face of tragedy.

It’s the hardest thing in the world, but you can make it through,” Jenna Haley told NBC. “We’re his parents and we’re going to take care of him as long as we can.”

 

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My Daughter Was Alive for 23 Minutes, and Every Second Was Beautiful

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Twenty-three minutes.

That’s how long our daughter, Lyla, lived.

Twenty. Three. Minutes.

That’s shorter than I had hoped, yet longer than I expected.

Let me explain.

At our 20-week ultrasound, my husband and I learned we were having a girl. We also learned she had a terminal defect called Anencephaly. Our daughter was missing the majority of her brain, and this was not compatible with life. She had a brain stem, which told her heart to beat and gave her body movement, but she would not live.

When I first heard this, I sat wide-eyed, breathless, looking at the doctor. How do you respond when given news like this? I couldn’t move. Time slowed down as I looked around the room and met eyes with my husband. And then my thoughts began to race. Not compatible with life? This means death. This means no sweet baby with curly locks, no kisses, no diapers, no late nights, no first steps, no scraped knees, no hugs, no first day of school, no uncontrollable laughter or tickle fights or Ring around the Rosie, no prom, no wedding. I began to weep.

I was blindsided. This was my first pregnancy, and the joy that filled our hearts suddenly turned into despair. I had two options — be induced at 20 weeks, give birth and be done. Or — carry full term (which was completely safe for me to do) and meet our daughter, who might not be born alive — and if she was born alive, she would only live for a short while. We’d have to say goodbye as quickly as we had said hello. Those were my choices. Just those two. I ached for a third choice, silently begged for one that would mean life. But a third choice never came. My heart was broken.

I mean, sick-to-my-stomach, don’t-get-out-of-bed, weep-at-a-moment’s-notice broken. Some of the worst moments of my life. I remember lying on the floor at home and weeping because that’s all I could really do. Flat out, on my face, weeping for my little girl.

I decided (and my husband stood by my choice) to carry Lyla full-term, in hopes to say hello (if only for a moment), hold her in my arms, hopefully hear her heart beat and tell her how much I loved her.

But in the midst of all the anguish, in the midst of the storm, the sun began to shine ever so slightly. The moments of sadness were softly sprinkled with joy.

This may sound crazy, but the nine months and 23 minutes I knew this little gal were life-changing. Real. Raw. Eye-opening. Breathtaking. Beautiful. Bittersweet. Wild. And filled with joy.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Our sweet little babe.

We came to some sort of understanding that this short existence was to be her story. A long life wasn’t her tale to tell. We turned her brief time here with us into a gift, a blessing to us that we were even able to know her (in the womb) and hopefully for a short time on her birthday.

Yes, my heart was filled with so much sorrow, but Lyla reminded me what real joy felt like and that you cannot know one emotion without the other. Lyla made it known in my heart that life is fleeting and my loved ones deserve to know how much I cherish them. Her sweet little soul encouraged me to express my love to my family and friends. Even now, when I talk with those I love, the conversation usually ends with an unashamed “I love you.” Lyla taught me that. Her tiny existence spoke volumes. She slowed down sweet everyday moments. She reminded me to stop and watch the sunset, listen to birds chirping, appreciate the “death” of winter because it simply meant new life was coming soon, to fill my life with laughter, to cry without shame, to love with abandon, to speak up, to listen, to hear others, to try my very hardest to journey through life with a nonjudgmental heart. That everyone deserves joy, everyone is worthy of kindness, everyone deserves their chance to speak, everyone needs love. It may sound crazy that an unborn baby taught me these things, but she did. And it brings happiness to my heart.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Lyla was born on June 20th, 2007.

She was placed immediately in my arms. I asked the nurse if she had a heartbeat, and her answer was yes. I listened to that slowing heartbeat, and my heart was overcome with sorrow and peace.

For 23 minutes, I held her in my arms, I kissed her cheeks, touched her fingers and toes, loved on her with every ounce of my soul, shared her with my husband and listened to her heartbeat slowly fade. And then stop.

Without a doubt I wish she was here. I ache for her and wonder what she would be like, what she would look like, what she would sound like. This June, Lyla would be 7 years old. And I miss her still. But I do not stay in the sorrow too long. I search for the things she taught me, the people she touched. I tell her story when I can, to those who will listen. I remind them to love one another and love with their whole heart. I’m reminded of Lyla in beautiful moments, in songs we sing at church, in the love I see families express towards one another, in rainstorms, in beautiful blue skies, in quiet moments of reflection, in laughter between friends, in the sweet love I have for my husband and daughter, Eden, and the love they have for me. I am so glad I met her.

Because of Lyla, life is full and beautiful and brighter and sweeter and richer. It’s full of heartaches and disappointments, but also full of peace and joy, thankfulness and laughter. We have a 6-year-old daughter, Eden, who is the treasure of my heart. I truly believe I love her in an even deeper way because of my sweet Lyla. She still affects me today, and I hope she always will.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” Kahlil Gibran

Miss you, sweet girl. Thank you for everything.

Love,

Mom

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Film Documents Life With Down Syndrome Like Never Before

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Sean Bogart has been on camera since he was a year old.

His filmmaking aunt and uncle, Didi and Richard Dobbs, began taping him to help themselves and others understand what it meant to live with Down syndrome. Their 28 years of footage is now scattered throughout their upcoming documentary, “Sean So Far.” But somewhere along the way, the film stopped being about Down syndrome.

In the trailer below, Bogart, 28, is wearing a neck brace. He’s sitting on a couch discussing the X-rays that were taken after an upper spinal surgery he had for his atlantoaxial instability, a condition that people with Down syndrome have an increased chance of getting.

Bogart had to put triathlon training on hold for 8 weeks to have and recover from the surgery. In the clip below, his aunt asks him what it was like to see his X-rays.

“Well actually,” Bogart says matter-of-factly, “I thought, ‘I look good in bones.'”

Didi Dobbs recalls this moment to The Mighty. “Who says that?” she says. “Sean always finds a side of things I can’t see.”

Today, Bogart is back to training with his triathlon partner, 19-year-old Troy Sundwall. They met through Unified Sports, a program that pairs athletes with intellectual disabilities and athletes without disabilities.  Together, Bogart and Sundwall will be the only two triathletes from Connecticut participating in the 2014 Special Olympics USA Games in June in Princeton, N.J. Their friendship is also a focus of “Sean So Far.”

Troy & Sean talking (1)

Twenty-eight years ago, when Bogart was diagnosed with Down syndrome, his aunt and uncle searched for information on the genetic disorder.

“It was the 80s, there was no Internet and we couldn’t find anything,” Didi Dobbs told The Mighty. “And everything we did find referred to [Down syndrome] as ‘mongolism.'”

Originally, they meant for their footage to be used for a what-you-need-to-know-about-Down-syndrome type of film. But the scenes they’ve captured are anything but clinical. They’re about a person.

“The story of the triathlon is the backbone of this film,” Richard Dobbs told The Mighty. “But, really, the triathlon is a metaphor.  The film is about Down syndrome, sure, but it’s also about perseverance, about family, about friendship.”

“It’s about being human,” Didi Dobbs adds.

The documentary won’t be complete until Bogart and Sundwall cross the finish line in June. A preview trailer is below.

The Dobbses hope that when people see the film, they’ll begin to look at their nephew the way they do and the way his training partner does.

“Their friendship is so real. Troy sometimes forgets Sean has Down syndrome,” Didi Dobbs told The Mighty. “Sometimes I do, too. He’s just a person, a person who brings so much joy to life.”

“I think the film will be helpful for anyone today who’s just gotten a Down syndrome diagnosis,” Richard Dobbs adds. “There’s this universal theme about what it means to meet a challenge — that’s what we’re trying to show.”

For updates on “Sean So Far,” visit Facebook.

If you’re interested in donating to this film’s production, head here.

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College Football Team Concocts Special Play So Fans With Muscular Dystrophy Can Join In

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Matt DeRiggi, 11, and Danny Garofalo, 16, are big-time Rutgers University football fans. In April, the two young men with Duchenne muscular dystrophy (DMD) got to do more than watch from the sidelines. 

The video below of a spring practice shows Matt and Danny executing a play on the field with RU’s team. A celebration breaks out afterward.

“[Danny] loved it,” his father, Dan, told NJ.com. “That’s what makes it all worth it. As small as something like that seems, it really is a big difference.”

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The Short Bus Stops At My House

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via Laura Hertzog

It’s funny how the length of the bus you ride has the ability to define you as a person. Personally, I rode the regular-sized bus, the one the “normal” students rode to school. However, there was another bus that happened to stop at my house every weekday morning. The short bus, “the retard racer,” the bus that was transportation for my brother. Yes, my brother rode the short bus and will forever be the root of some kid’s immature joke. Or even worse the root of some adult’s joke. My brother is defined by his transportation of getting to school. They look past his ability to smile while making his bed every morning, or him surviving five open heart surgeries before the age of 5, or his ability to say “Luve you all.” It’s all looked past because of society’s standards of perfection.

Society has its stereotype of perfection for high school students. And let me tell you, the qualities of Down syndrome do not match our standards of perfection. Slurred speech, trouble writing, slowed motor skills, noticeable scars are the blunt indicators of the imperfections my brother has that society tells him and our family. His cognitive abilities will never meet education standards. I can remember the day my mom told me my brother did not meet the minimum of the bottom 2 percent on a standardized test. The anger stays with me today. The test didn’t show how far he has progressed from his starting point. It simply just related him to his other peers. He will always need to be in special education, he will always need a para helping him through the school day.

This may be how my brother is viewed in society, but I can tell you this is far from how I view my brother. David may be 17 months younger than me, but I view him as a role model, someone to impersonate. As I wake up in the morning, worried about if I will have enough time to put on makeup, and what the cafeteria is serving for breakfast, and how hard practice is going to be, and am I going to have someone to sit with at dinner tonight, and how I’m going to have to read 60 pages and make sure I keep up on social media; not one of those things come as a concern to David. There is something beautiful about his innocence. His worries in life are so minor compared to the average person. His worries consist of grabbing his two favorite toys to bring with to school, making sure he brushes his teeth in the morning and making sure the channel is tuned to the evening news at six. It’s humbling to observe.

I didn’t ask for my brother to have Down syndrome, nor did my parents, nor did my brother. However, I know we can all agree David is the reason our family is so strong. It’s the reason my mother fights to uphold human dignity every day. It’s the reason for my father’s compassion. It’s my reason for counting my blessings at night. It’s the reason for my sister’s generosity. Down syndrome may have put some road blocks in the way, may have caused some eccentric looks from strangers in the crowd, but ultimately Down syndrome has brought my family joy and has redefined perfection for each one of us.

And the short bus stopping at my house was the greatest blessing.

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