Jerika Bolan

Disability Activists Want to Stop Jerika Bolen, Teen With Rare Disease, From Ending Her Life

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Back in July, 14-year-old Jerika Bolen made headlines for deciding to enter hospice care this September, and forgo using her ventilator – a measure that will ultimately end her life. Bolen, from Wisconsin, was born with spinal muscular atrophy (SMA) type two, a rare disease that causes muscle weakness, trouble breathing and feeding difficulties. With medical interventions, the disease is not fatal, although it is life-threatening.

Now, disability rights advocates are trying to convince the teen, her family and child protective services that Bolan should not be allowed to die. “A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Carrie Ann Lucas, executive director of Disabled Parents Rights, told USA Today.

Disability advocates have been trying to dissuade Bolan and her family since her decision went public in July. Others with disabilities have been sending letters to her via the Letters for Jerika campaign, which seeks to inform Bolan that a life with a disability is a life worth living.

In previous interviews, Bolan, whose movement is limited to her head and hands, said she lives in constant pain. The teen added that she is afraid of continuing her life in pain and any further medical interventions she may require.

In addition to asking child protective services to intervene, advocates are asking Bolan to seek counseling. “Any other teen wishing to die receives suicide prevention, not suicide assistance,” Disabled Parents Rights group shared on its Facebook page. “If child protection is not involved in Ms. Bolen’s situation, despite statute and caselaw that is clear that it is unlawful for children to terminate medical treatment, she is a victim of disability discrimination in addition to the medical neglect.”

On Tuesday, Bolan’s mother, Jen Bolan, asked for privacy and declined to comment any further about her daughter’s care.

Photo Credit: GoFundMe

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How Spinal Muscular Atrophy Changed Our Childhood

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It’s always been me and my brother, Justin. Either us against the world, or as kids ― us against each other.

We’re only 11 months apart in age and I don’t know a day in my life where he doesn’t exist. That’s why this is not the way I planned it. Unexpected sickness has unfortunately been the norm in our family, but this time feels a little different. Justin has a cyst growing in his throat that can’t be removed safely and time may be running out for him.

The innocence of a child can be what saves you, but also what breaks you as an adult. As a kid, I would run down the hall to peek at the presents on Christmas morning, yelling for everyone to come see Justin walk. It was the only thing I had asked Santa for one year and then the next year I added a Nano-Baby Tamagotchi to my miracle request. I might have gotten the Nano Baby, but my brother didn’t walk as I had wished. I used to think that was all there was to it, and the only trouble was that Justin couldn’t walk.

I think that he and I both believed that for quite a long time… but the jarring truth of reality caught up with us when we became old enough to understand his disability.

I know I’m not “the sick one,” but I was always there. Watching the super down lows in between the wonderful highs takes a toll on a kid. I just wanted my brother to be OK. I didn’t want him to go away to the hospital. I didn’t want him to miss out on places that weren’t wheelchair accessible. I felt guilty playing sports because he couldn’t play. There was a one in four chance it could have been me to inherent two copies of the gene mutation causing spinal muscular atrophy. I luckily only inherited one copy, but if I have a child with another carrier, that haunting one in four statistic reappears. This is also the same chance my brother dies and I live ― it’s not fair.

One day, our aunt was carrying 5-year-old Justin up the stairs. Although he was a tiny little thing, she let him know that he was getting to be a big boy and too heavy to carry up all those steps. He responded to her with “That’s OK, because pretty soon I’m gonna be walking!” Justin and I waited and waited for that walking day, but unfortunately, that may not happen on this earth.

Earlier that same year, Justin’s lung collapsed on his 5th birthday. Moments before this happened, he kept saying to our mother, “Mommy, mommy, lift my legs! Lift my legs higher! Higher!” No matter how high she raised his legs, it wasn’t as high as he was requesting and not as high as where he was going. Justin called out, “Mommy where’s my angel?! Where’s my angel?” Mom told the nurses that she didn’t know what was going on and that he kept asking for his angel… then he flat-lined. The medical staff rushed into the hospital room. Mom looked to the edge of the room and saw the light of her deceased grandfather standing there — a guardian angel sent to protect them. She said he was there to let her know that no matter what, everything would be OK.

By the grace of God and a miracle, Justin survived that day. He was not meant to die a young boy. When he finally woke up, probably a few days later, he told our mom that he had walked up the golden stairs to Heaven and that he saw Jesus and Nana. We had lost Nana recently, and boy did she love her Justin more than anything. Jesus and Nana told him that it wasn’t his time and he returned back to us. That miracle series of events has given me hope time and time again. I know that Nana is waiting patiently and that someday my brother will be walking just as we’ve always dreamed.

Looking back on hundreds of hospital stays, a major spinal fusion surgery and countless other procedures, needles, tubes and wires, I realize how hard it’s been hard on all of us. It’s not fair to Justin and it’s not fair to our family who loves him. But despite his diagnosis, Justin has truly lived.

Justin has accomplished all the things people never thought he could. He finished high school, he almost finished his degree at UConn― he has only two classes to go if anyone can hook him up with that diploma. “A” for more than eight years of effort right? He has traveled ― like that time he partied in Vegas and drove his wheelchair through a taped off crime scene. He lives on his own. He was offered and began a job at Apple three years ago because of his extensive knowledge of Apple products and technology. He’s been promoted from Specialist to Expert, trained the team in opening a new store, and feels so much pride in his success. I can’t thank his Apple family enough for their unwavering support, love, respect and admiration for Justin.

Besides any Apple product, Justin’s “number one” in life is his niece, Hayden. She constantly gives him another reason to never give up. He also has amazing friends and family that see far past his illness, and he has lived a good life despite his genetic disease. One thing he hasn’t done yet is meet Tom Brady, so if anyone knows Tom, please tell him that Justin’s waiting on his invite and he’d really like a Super Bowl win this season, #FreeTomBrady.

Justin, I want to be strong for you. I want you to know that I will be OK. I have to take care of your beautiful niece, Hayden. She’s the light of our lives, isn’t she? She gives us hope despite the cards we were dealt as a family. She loves you and she always will. She’ll know that her future dance lessons are a gift from Uncle Justin. If she wants to play an instrument or lots of sports, she’ll think “good thing Uncle Justin loves me so much that he saved up just for me!” If she finds a boyfriend, she better hope Uncle Justin doesn’t haunt him. I know you’ll watch every moment of her growing up and we’ll remind her that her “Uhn-coe” is always with her. I’ll take care of our amazing mother, too. I’m selfish because I don’t want you to go, even though I know the disease is what’s dying and that you will be completely free. Your body is not your forever home. Soon (but not too soon) you will be able to walk and do everything on your own. You will be pain-free. I know these are positive things, I really do. But the pain for me is still there. It only hurts because I love you so much. You’re my other half and my best friend. I don’t know what my life will be without you.

Justin, I’ll remember that you said you feel at peace with your current circumstances. That peace will push me to find a way to make it through. You’ve accepted your fate and that in itself is brave, honorable and special. I look forward to the day we can walk side by side for the first time, as we’ve always wished for. Until then, we will enjoy God’s gift of the time that we have left.

I love you, Big Brother.

Love Always ― no matter what life throws at us,

Your Baby Sister

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20 Secrets People Affected by Spinal Muscular Atrophy Want Others to Know

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Spinal muscular atrophy (SMA) is a disease caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein critical to the function of the nerves that control our muscles. Without it, these nerve cells cannot properly function and eventually die.

There are four types of SMA that range in severity, but all of them cause difficulties with walking, performing the activities of daily life, eating and even breathing. In its most severe form, SMA is the number one genetic cause of death for infants.

There is currently no treatment for SMA, but a number of drugs are being tested in clinical trials, and one of these will soon be presented to the FDA for approval.

August is SMA Awareness Month, so The Mighty collaborated with Cure SMA, an organization dedicated to the treatment and cure of SMA that has led and invested in research, making many of today’s breakthroughs possible. We asked our communities: “What’s one secret you want others to know about having or caring for someone with SMA?”

This is what they said:

1.You do not need to be afraid to be around us. We are still the same family we were before the diagnosis, only more fragile. Take precautions; don’t disappear. Ask us questions about our daughter. It does not hurt our feelings. Questions help spread awareness.” — Majerie S.

Daughter in mermaid suit with SMA
Majerie’s daughter
2.“These children are brilliant and can communicate in fascinating ways. Just because my son can’t move, doesn’t mean he can’t get his point across! He is 2 and tells me what he wants — down to what socks he wants to wear. Learn the way SMA children communicate and you will be blown away by how they can hold a conversation!” — Autumn J.
Son with SMA wearing glasses
Autumn’s son

3.It’s not the end of the world. I am 28 with SMA type 3 and have been quite successful in life so far as a teacher. Don’t let any disability or label define who you are. There is always another way.” — Megan E.

4.I would want others to know that caring for someone with SMA is not a burden. It’s not an awful and sad life. We live our life feeling blessed and grateful for each day. My daughter has truly been the biggest blessing in the world.” — Shellie L.

Shellie with her daughter who has SMA
Shellie and her daughter

5. “It’s the hardest and most rewarding job at the same time. They are extremely smart and bright. This is my daughter. If anyone can make you smile it’s her.” — Kelsy H.

Kelsy's daughter with SMA in a pink wheelchair
Kelsy’s daughter

6. “Living with SMA has taught our little family to learn to love a different kind of ‘normal.’ Yes, our daughters (both with type 2) cannot walk or move around on their own, but they are vibrant and full of life! They teach us every day to enjoy the moment and never limit the possibilities.” — Robin H.

Robin with his two children who have SMA
Robin and his children

7. “Don’t limit your expectations of what is possible for your child. I used to be surprised when my son or daughter would do something I never expected they’d be able to do. Now I watch and wait to see what they’ll accomplish next, knowing there is no limit to their potential.” — Danielle S.

8.My wish would be that the new drug that’s supposed to help cure SMA be here sooner then later.” – Melissa D.

Melissa with her son who has SMA on his birthday
Melissa and her son

9. “Being a caregiver isn’t giving up your time to help a child grow, but taking time to grow alongside the child.” — Chelsea K.

10.This disease does not define my husband. He is an individual who has spinal muscular atrophy. He is strong, loving, caring, and a wonderful father. SMA is a part of him but it does not define him.” — Adolfo P.

11.Take time to get to know my son and he’ll steal your heart just like he did mine from that first moment I saw him.” — Chris O.

Chris' son with SMA smiling in his wheelchair
Chris’ son
12.Caregiver fatigue is real. Self-care isn’t selfish. Keeping active and keeping social is so important in caring for my hubby of 28 years who has SMA type 3.” — Alicia L.

13. ”SMA takes away what dreams I ‘thought’ I had for my son, allowing me to see the dreams that my son has and will achieve.” — Bridget C.

14.It’s not always visible. Don’t judge. Just because I can’t do something doesn’t mean I don’t want to do it. Don’t think I’m not working as hard as I possibly can to keep the strength that I still have. I won’t give up on myself and no one else should give up on me either!” — Courtney F.

15. “I would want others to know that they do not know the meaning of true happiness until they have met someone with SMA. My son faces many physical limitations, yet he is always happy and smiling, and making others happy as well. It is impossible to be sad around him.” — Renee H.

Son with SMA smiling in chair
Renee’s son

16. “Don’t worry about breaking our kids. They are pretty tough. Also, parents and caregivers need to take the occasional break!” — Kelsey L.

17. “I have developed an amazing, special bond with my daughter. Even though she is going to be 16 years old, I still can carry her, hold her tight, tickle her and love her.” — Ruthie P.

Ruthie's daughter, on the photo it is written "I love you"
Ruthie’s daughter
18. “My beautiful, loving, caring, daughter is 45 years old. She is and will always be the light of my life. She has good days as well as bad, but she just never complains.” — Margaret A.

19. “I am a 19-year-old with SMA. I have moved out of home and am currently attending college at RMIT in Melbourne, Australia. It’s definitely not a death sentence.” — Harrison K.

20. “Even with SMA being a terminal diagnosis, it has taught us more about life then death. It has taught us how to love deeper, forgive quicker and be thankful for each day we are given.” — Brittney M.

Brittney with her family
Brittney’s family.

Are you affected by spinal muscular atrophy (SMA)? What’s one secret you wish others knew? Let us know in the comments below.

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Alyssa Silva's Summer Goal Is to Gain Weight, Not Lose It

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Alyssa Silva's Cover

Alyssa Silva’s goal is to gain weight this summer. “There are definitely some improvements that I could make as far as weight gain goes,” Silva said. “However, with that being said, I don’t obsess over how I look to others.”

In some ways, Silva, who lives with spinal muscular atrophy, feels pressure to have a certain body type. “I’m sure this isn’t the case, but I can’t shake the feeling that people judge how skinny I am,” she said. “The summer months don’t help with these thoughts as I am showing more skin to avoid overheating.”

To manage her condition, Silva wears a body brace and ankle braces – often choosing to dress in a way that keeps her braces hidden. “It’s a personal choice I made a long time ago,” the 25-year-old said. “Most days in the summer I will wear a loose maxi dress to hide what’s underneath, not because I feel like society says I should based upon body image ideals, but because I don’t want to draw more attention to myself.”

Silva, from Rhode Island, tries her best to think positively about her body. “Throughout the summer there’s always a small part of me that feels self-conscious,” she said. “I understand that, because of my condition, I will always be skinny and will always have muscle contractures, but it still doesn’t change how I feel.” While Silva has yet to overcome these feelings, she has learned to live with them. “At the end of the day, my body type doesn’t determine the kind of person I am.”​

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: Mariah Hillis, on Going to the Beach With CCHS and Scoliosis

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What I Miss When I Leave My Medically Fragile Daughter to Work Outside the Home

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The baby I was told I would no longer have by this time turned 3 the last Sunday of June. It was a sunny miracle of a day, this day we didn’t believe we would be blessed to enjoy. Heidi was diagnosed with spinal muscular atrophy type 1 when she was 3 months old. We were told she would be unable to breathe on her own within about a year. Her life expectancy was up to 2 years old. But Heidi has been able to benefit from a clinical trial drug. She breathes without ventilation and has more movement and strength than any of us would have believed possible. On her birthday, Heidi went to the mall, saw Finding Dory, shopped for toys and enjoyed her therapy pool.

When Heidi was diagnosed in October of 2013, I abandoned practicing law, in part to care for Heidi’s medical needs and in part because I wasn’t mentally competent to practice. I’ve spent the last nearly three years at home with Heidi, caring for her, arranging her appointments, and writing a book about our family’s experience with her. I finished my book Juncture at the Still Point in the spring and I’m sure that writing helped me keep my sanity during the couple of years after Heidi’s diagnosis.

Instead of the predicted deterioration and death, however, Heidi has exhibited slow but remarkable improvement. Recently my husband was laid off from his job and I ventured back into the work world. Not the high pressure, fractious world of litigation, as I had been a part of before, just low-paying litigation support projects. It’s low-stress, but also low-paying. It won’t pay all the bills, but if I have to suddenly leave work for an emergency, I don’t have clients who could go to jail or lose custody of a child as a result.

Leaving Heidi at home, even with a nurse and her father, is harder than I could have imagined, and for different reasons than I would have thought. Heidi’s medical condition is precarious and subject to sudden emergency, but Heidi’s nurse knows her needs well and her father certainly does. What makes leaving Heidi to work outside the home so hard is simply missing her and missing out on everything that goes into her care. I’m not able to make the calls and emails necessary for lining up her medical and nursing care and therapies. I’m not around to get updates from her therapists. It’s only been a few weeks since I began working on these projects. I don’t take Heidi to her doctor’s appointments or speech therapy. I wasn’t able to go to her Individual Education Plan meeting. Every morning I walk out the door feels like a day of something lost.

Though I gave up my previous career in law due to Heidi’s condition, I don’t miss that career. Instead, I now miss every moment that I might spend with Heidi, knowing her life can be unexpectedly taken at any time by a common cold that goes to pneumonia. As Heidi’s condition more often presents as physical disability than imminent death, however, my goal is to work toward as secure and consistent a life as possible. Our family must evolve as our  “new normal” with Heidi continues to shift in directions we can’t predict. If financial hardship sometimes brings knowledge of what is important to people, the disability or chronic illness of a loved one does so much more essentially.

Most of us have some sense as we walk out the door to go to work that we are doing so for our families. We want our children to have stable lives that include food, shelter, medical care and a bit of recreation. Sometimes, though, parents get lost in the demands of work and alienated from the reasons for our efforts. Heidi changed this for me. A child with a life-threatening condition keeps a mother ever-conscious of what’s important. Heidi keeps me aware of what my efforts and commitments should be for: happy and engaged time with our loved ones, an awareness I deeply wish I’d had with my older, healthy children.

On Monday, before I leave the house to go to my project job, I take a couple of minutes to recall Heidi’s birthday. I summon Heidi’s smile as she watched Dory dart around the big-screen aquarium of neon fish in search of her parents. I recall the wonder in Heidi’s eyes as she worked to propel her little wheelchair around the outdoor space at the mall, a wide-open space new to her. She had later struggled to move her wheelchair with one hand and hold onto her new toy drum set with the other.

These are the moments we live and work for. As I miss Heidi today while I’m at work, I’ll remember yesterday and look forward to what the weekend will bring.

The Mighty is asking the following: Describe a moment at work that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. If you are unable to work, tell us one thing you wish others understood about your situation. Check out our Submit a Story page for more about our submission guidelines.

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To the Stranger in Starbucks Whose Kindness Showed Me What Matters Most

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Yesterday I woke up with a heaviness inside my soul I thought would rid itself after a good night’s sleep. After having a physically and emotionally exhausting day the day before, I thought for sure the anger and frustration I was feeling was just a result of the fact that I was tired and hungry. Instead, I started my day feeling the same way I felt going to bed the night before: defeated and drained.

I went back and forth with the idea of writing this post. I’m not the kind of person to sulk and feel sorry for myself nor do I want others feeling that way towards me. But just like many writers can attest to, writing is my form of therapy. It allows me to think more clearly and gain a sense of relief as I type these words to share with the world.

So, before I begin to chronicle my thoughts and experiences within last 48 hours, I hope you understand this isn’t a post meant to draw attention to my shortcomings. What you’re about to read is a snapshot of my life living with a horrible degenerative disease, yet surrounded by something it can never take away: love.

A couple of days ago was my annual appointment for my disease, spinal muscular atrophy (SMA), a day in which I spend hours in a room at Boston Children’s Hospital and teams of doctors come in to discuss my needs and measure the progression of my disease. Or as I like to put it — it’s a day in which a group of doctors basically discuss, in the nicest, most delicate and intelligent way possible, how your disease is destroying your life.

Now, I must say how truly fortunate I am to be a patient among the best doctors in the world. I trust their judgments and respect their decisions, as I understand they know and want what is best for my well-being. However, this makes hearing what they have to say all the more difficult. Because I trust them. Because I know their expert medical advice and guidance is only going to help me. But it’s still a lot to swallow. And I’m not sure I’m ready to make such life-altering decisions.

I left the hospital that night feeling envious. I envied the person walking in the lobby who was able to eat a meal and not worry about being under nourished. I envied the valet man who had the strength in his lungs to yell to his co-worker from across the way. I envied the surgeon who had the strength in his hands and feet to save someone’s life. I envied anyone and everyone not living with SMA that night, and couldn’t shake the feeling. So, I went to bed.

I woke up still feeling pretty crummy, but I eventually forced myself out of the house with a friend to keep my mind occupied. In an attempt to drown my worries with copious amounts of coffee, I found myself in line at a Starbucks getting my third cup of the day. Suddenly, a woman approached me and said, “Hi! Remember me?”

She was a petite woman with kind eyes, and radiated a kind of energy that made you feel at peace. Despite the fact that I am my mother’s daughter and have a terrible memory, I recognized her immediately. She was the stranger I met in Dunkin Donuts at Christmastime: the stranger who gave me a $100 bill.

“What a lovely surprise! Of course I remember you,” I exclaimed as we exchanged a hug and a kiss. We spent a few minutes catching up, and before she returned to her table, she handed me $100 more. As hard as I tried to refuse the gesture and explain her kindness at Christmas was more than enough, she said, “You deserve this more than I do. By the way, my name is Cookie.”

I watched Cookie return to her table before ordering my coffee. After I gave the barista my order, I turned around a second later to continue talking to the woman at her table, and she was gone. Not a single trace of Cookie in sight. I looked at my friend, slightly confused while still in a state somewhere between shock and awe.

“Where did she…?” “How did she…?” “Why did she…?”

I couldn’t seem to form a complete sentence. I took a long pause and finally said to my friend, “I think… she’s an actual angel.”

In that very moment, I found the clarity I so desperately needed when I woke up that morning. It wasn’t sleep or food or wallowing I needed to move past the inevitable disappointing realities I faced the day before. It was Cookie and her innate ability to demonstrate kindness to someone she hardly knew. Through her kindness, I was reminded of all the love that surrounds me each and every day and how fortunate I am to be in the position I’m currently in. SMA can take away my muscles, but it can never take away the love that fills my life. And that’s really all I’ll ever need to keep moving forward.

Cookie, wherever you are and whoever you may be, thank you for being an angel here on earth. You will never know how deeply your kindness has affected me and how close I hold you to my heart. Until we meet again, dear friend…

Image by Endrjuch – Own work, CC BY-SA 3.0.

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