5-Year-Old Figures Out Incredibly Sweet Way to Help Cure Angelman Syndrome

306
306
0

When 5-year-old Na’ama Uzan learned that part of the reason researchers had not found a cure for Angelman syndrome was because of lack of funding, she decided to take matters into her own hands.

Last summer, Na’ama, who lives in Toronto, started a lemonade stand to raise money that will go toward researching a cure for the rare neuro-genetic disorder afflicting her older brother, according to CBC news.

“My brother, Nadav, has Angelman Syndrome, so we’re trying to raise money for a cure so he won’t have it anymore,” Na’ama tells CBC News in the video below.

Na’ama’s ambitious project took off last year with incredible force. Her endeavor has prompted many others to join her, transitioning her original lemonade stand into a community-wide fundraising effort. Since Na’ama first opened her lemonade stand last June, she and her community have raised more than $19,000 that will go to the Foundation for Angelman Syndrome Therapeutics, The Canadian Jewish News reported.

Na’ama isn’t ready to stop there. She plans to resume fundraising on January 29, this time through a hot chocolate stand.

“This has turned into something so enormous,” Na’ama’s mother Ruchama Uzan said, according to The Canadian Jewish News. “When I was 5, I wasn’t doing anything like this!”

Learn more about Na’ama’s project in the adorable video below.

For more information about Na’ama’s project or to participate, please email the Uzan family [email protected] or visit their Facebook page.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

306
306
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

My Younger Sister Handles the ‘Big Sister’ Role. And I’m OK With That.

761
761
2

I’m a huge “Frozen” fan. I mean, really, who isn’t? Anyways, back to the point of this article: sisterly love.

It’s magical and one of a kind. My sister and I are two years and two months apart. I was born first. So in chronological terms, this means I’m older than her. I’m supposed to play the older sister role, and she’s supposed to play the younger sister. This isn’t how it always works in our family.

You see, I have autism. My sister reached some developmental milestones before me. In so many ways, she’s my big sister, even though she’s younger than me. I look up to her with all my heart; she’s truly the greatest sister a girl could have.

JandI I know being my sister isn’t always an easy task. My sister was sometimes a 10-year-old girl left wondering why her 12-year-old sister won’t play makeup or let her paint my nails. She was a little girl trying to cope with and accept with the fact that her older sister sometimes seemed to be more engaged while playing a computer game. But, when I did play with her, it was glorious and fun. We played a game we called “babies” with our American Girl Dolls. The sky was the limit, and our imaginations went wild. Playing “babies” is one of my favorite childhood memories because when we played that game together, we just were two little girls playing with dolls, two sisters playing with dolls, two sisters having fun.

My sister loves me, no matter what. Through all the tears, meltdowns and screaming and rough days over the years, she’s loved me with all her heart, just as much as I love her. Through all the many times I’ve embarrassed her (because it’s inevitable), she’s some how learned to forgive me and put a smile on her face and move on.

As my sister neared finishing high school, and I was still in school, it all started to go full circle in my head. Her being my older sister was becoming even more of a reality. She has a boyfriend; I don’t. She started college — before me. In my mind, I felt like I was supposed to be doing these things first. I was supposed to be trailblazing the way for her and showing her the ropes. I was supposed to be helping her get ready for prom, not the other way around. I was supposed to be doing her hair, instead of her doing mine over and over again. She does this all for me.

I’ve come to realize, it’s OK. Really, it’s OK. Our relationship is our normal. We both love each other just the way we are. We both teach each other in so many ways. Even though I didn’t teach my sister about boys, driving or makeup, I taught her some important things about life, including acceptance, and patience.

Thank you to my sister for being such a great sister and loving me unconditionally. I love you to the moon and back.

unnamed (99)

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

761
761
2
JOIN THE CONVERSATION

The Letter I Wish I Could Have Written My Parents When I Was First Diagnosed

359
359
3

Dear Mommy and Daddy,

I know I may not be what you probably dreamed of, hoped for or expected. I can only imagine the emotions you must be feeling — guilt, fear, confusion and joy all mixed up together, as I entered this world and was whisked away just as fast. You probably have a million questions buzzing in your head. What? How? Why? But don’t let that get in the way of you seeing me as perfect, because I am, despite the body I was born with. My body is not me. My condition is not who I am, and even though in the coming weeks and months and years, you will be infused with a lot of terminology, medical diagnoses, care plans and surgical options, please don’t forget that inside my body, there’s a heart and a soul that needs to know you love me just the way I am.

To be healthy and strong, it will be in my best interest for you to try and fix my body. I know this and I am grateful for that gift. Some of my treatments may be painful and it will be difficult for you to stand by and watch me go through these experiences, but please try not to worry too much about that part because I’m resilient and I will make it through and come to understand why these treatments were necessary. But, along the way, please don’t allow the professionals involved in my care to reduce me to an object, a case study or a subject for a paper. Please don’t let me be treated as an anomaly, a statistic or a freak of nature because I’m not any of these things.

As an infant, I will not be able to tell you how I feel. I can only cry when I’m in pain and smile when I’m happy. I will learn a little more about the world each day and either grow to trust it or learn it’s a scary place. My needs may be overwhelming, but I will give back ten fold in ways that you may never know. I realize how tiring, how stressful, how agonizing it must all be for you, and I appreciate every sacrifice you’ve made and will have to make in the years ahead.

No doubt, you will be offered many opinions on what you may expect from me in the future — the things I may be able to do, but more likely, the things I may never be able to do. Take these opinions with a grain of salt. Just believe in me and I will surpass every limitation others have imposed upon me. Encourage me, but please don’t treat me differently because I’m not any different in the ways that really matter.

As I begin to grow older, the physical differences between me and others will become more clear, and it will be at that time that I will need you more than ever. I’ll need you to remind me of what I just said — that I’m the same as anyone else and should never feel any shame in my body.

At some point, I will have questions — some may make you uncomfortable or embarrassed, but please try your best to either answer them for me or find someone who can. It’s important for me to fully understand how my body works. I deserve to have everything everyone else does but may need more guidance in getting those things. Please be patient with me as I search and try to determine and understand what those wants and needs are. I may even be too shy or embarrassed to bring certain things up to you, and if this happens, I will need you to anticipate my questions and let me know you’re always there for me, no matter what.

I can’t promise it will all be easy and for this, I am sorry, but I just want the opportunity to grow into the person I was meant to be. With your love, support and protection, I know I will. I love you both.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

359
359
3
JOIN THE CONVERSATION

How One Woman Is Using Scissors and a Smile to Help the Autism Community

174
174
1

Colleen Spano, 46, from Mishawaka, Indiana, is the founder and CEO of Sunshine Behavior Consulting and Shear Sunshine, two businesses centered around helping people with disabilities.

Spano got her cosmetology license right after graduating high school and also has a Master’s in education, she told The Mighty. And when she discovered her daughter, Izzy, now 18, is on the autism spectrum, Spano further focused her career goals.

She now owns a consulting business offering behavioral coaching. Last spring, she started a new business, Shear Sunshine, offering sensory-friendly, in-home haircuts for children on the spectrum.

Often for children on the spectrum, loud noises, bright lights, strange smells and unknown people and places can be upsetting — and a hair salon generally has all of these things. Spano tries to combat the trauma associated with getting haircuts by creating a friendly environment. She emails her clients a picture book telling the child what to expect from her visit. She then spends time getting to know the kids, brings toys, offers lots of breaks and allows them to sit in a parent’s lap and in whatever room they feel most comfortable.

“I would like to make one less thing stressful for them, make them feel in control,” Spano told The Mighty.

Screen Shot 2015-01-26 at 2.32.08 PM

Spano, who currently has around 30 clients, is in the process of expanding the business. She would eventually like to organize visits to group homes, special education departments or any place where children are overwhelmed or upset easily by the necessary act of getting a haircut.

“I know it’s really hard when your child has struggles, especially when it’s something you can’t do anything about. Kids have to get haircuts,” Spano told The Mighty. “And it’s nice to be able to take one less stressor off parents’ plates.”

Check out some of the smiling faces of her satisfied customers below:

Screen Shot 2015-01-26 at 2.27.42 PM

Screen Shot 2015-01-26 at 2.28.31 PM

Screen Shot 2015-01-26 at 2.29.31 PM

Screen Shot 2015-01-26 at 2.31.32 PM

Screen Shot 2015-01-26 at 2.31.45 PM

For more information, visit the Sunshine Behavior Consulting website or the Shear Sunshine Facebook page.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

174
174
1
TOPICS
JOIN THE CONVERSATION

When I Stopped Feeling Sorry for My Little Brother With Autism

353
353
6

I was 4 or 5 years old when my younger brother was diagnosed with autism. The day isn’t memorable to me, but what I do remember is the struggle to understand and explain my brother’s disability. In elementary school, my cousin’s next door neighbor saw Michael stimming and asked, to no one in particular, what was wrong with that boy? Wanting to protect him from any discussion or criticism, I lied and said he was too young to speak. The discussion ended there.

For my college entrance essay, I chose to write about Michael because I thought it would evoke sympathy and admiration from the reader. Surely the admissions officers would understand my struggles by reading about Michael running away from me or me dealing with the idea that my younger brother’s life would be so different from my own. These ideas were unjust because they didn’t show how much Michael had developed, and would continue to develop, as a result of busy days and positive attitudes. 

When I got to college, my freshman English professor asked for an essay on a world event that directly affected our lives. I decided to write about the “autism epidemic” and how it had affected my family. Again I wrote about how I felt bad for my brother and how anxious we were when he ran away. I got the essay back with a resonating question: Where was Michael in this essay?

Where was Michael in this essay? Did my professor not understand that he’d run away and wouldn’t reappear until my neighbor found him in paragraph four? Had she not read that far? Not quite. She meant my paper lacked Michael’s character and the connection we had. My claim — having a brother with autism was hard — didn’t fully communicate the love I had for my brother and the love he had for me.

Sometimes the stories we tell others are the ones we think they want to hear.

In my revision, I chose to focus on the more important parts of the essay, the parts that captured Michael’s personality and depicted our relationship as siblings who contribute to each other’s lives and support each other. This is the story I’m trying to make clearer to myself and to others. It’s what I would tell myself from the beginning, had I always recognized his innate value and had I always had faith that others would respect and love him just as my family does. 

Michael doesn’t differentiate family from friends. After my brother brought one of his friends, Brianna, to the house for the first and only time, Michael told my parents “Brianna’s coming home soon.” He asked about it for weeks and mentioned it anytime my brother’s return was brought up. Michael’s understanding was that Brianna was part of the family simply because she visited and was my brother’s friend. His perception extends beyond this occasion. When my boyfriend comes to my family’s house, I ask Michael, “Is Alex a friend or a brother?” Michael responds emphatically that Alex is a brother.

In preparation for holidays, Michael has his own unique lists. Not of gifts but rather he lists to my mom who will be in attendance. As my cousins are getting older and beginning their own families, the entire family is rarely together, but Michael remains optimistic that we will all be present. We sometimes think his fixation on everyone being there is strange, considering he usually spends most of Christmas Eve watching movies in another room. Yet he’s undeniably happy at my aunt’s house when everyone is present. Our presence is a gift he values, despite having a disability that’s characterized by a lack of social skills. This is humbling. 

Picture of michael and family

Being present is something Michael does each and every day. Currently, he’s in a day program. He goes there five days a week, attends after school programs, plays on a basketball team, works out with my dad at the gym and has at home ABA therapy three times a week. In spite of all this hard work or because of it, he’s usually in an upbeat mood. Productivity helps him thrive. It’s usually during the lulls of stay-at-home vacations that he may struggle or get upset.  

As a lazier sibling, I get to hear about or witness his busy weekends. This leads me to a long line of questioning and action. What can I do to feel fulfilled? How can I make my weekends and my life more purposeful? The thoughts have motivated me to pursue running, volunteering and searching for meaningful work. 

Michael makes me and my family laugh and smile all the time. He combs his hair and then immediately messes it up maybe because it’s uncomfortable. After he wakes up in the morning, he lists bakery items he wants my mom to buy, anticipating sweets and future holidays. He tells my aunt to go home on Thanksgiving. Everyone else has left and he wants to be alone. Michael says and acts with neither hesitation nor disdain. His motive may not be to make others laugh, but the unique ways he sometimes expresses himself are cute, brave and honest.

To make his Holy Communion in the Catholic Church, Michael had to first complete reconciliation. Confessing his sins seemed totally useless to me and my mom. We wondered what sin could he have committed. He doesn’t lie or harm others. He doesn’t steal or judge. As far we know, he’s always committing small acts of kindness like packing my dad’s bag to go to the gym or setting the table for dinner. The simple moments improve our lives.

My recognition of Michael’s incredible presence has taken time to develop, and it’s become more distinct as I get older. I’ve stopped thinking of his life as a backdrop and one that only deserves sympathy. I’ve begun to acknowledge who he really is and reflect on his positive influence on my own life and the lives of my family and friends. I’m grateful for this new perspective and for having a brother who is so pure, loving, hardworking and full of joy.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

353
353
6
TOPICS
JOIN THE CONVERSATION

When We Found Out Our Son Would Not Be Like Everyone Else

767
767
9

Resting my hand on my husband’s back, I felt the fear in his clammy t-shirt. We were in the darkened ultrasound room waiting for the doctor to explain. I’d never felt this level of panic, a surge of pain, a hurt only parents can feel when they get dreaded news. There is something wrong your baby. 

Today was supposed to be such an exciting day. We were going to find out if our peanut was a boy or girl and share the news over pizza with my sisters — sausage for a girl, pepperoni for a boy. We laughed throughout the ultrasound and marveled at our baby’s activity, watching him kick and reveal his grainy little organs to the technician on the screen. I couldn’t look away when it was time for the gender reveal and found out early — pepperoni for dinner! Then the tech told us she would be right back, that the doctor had to look over our scan. We waited for an eternity. What was taking so long? He was perfect; we’d just seen all of his organs.

With each passing minute, our anxiety levels rose. The doctor came in and began the ultrasound all over again. The brain was perfect, the heart was fine, the kidneys, bladder and stomach were all normal. Then he began to explain.

“The reason we’re looking so closely is because the tech couldn’t find his left arm. It is here, but I’m afraid I have some bad news. Your son appears to be missing his left fingers.” No fingers? Small hand? Partial thumb? How could this be? Why us? This is not the lottery with the impossible odds you dream of winning.

This was it. This was the shoe we’d been waiting to fall. Here it was, our own family nightmare.  We’d been so blessed. And that’s exactly what I’d go back and tell myself if I could relive that moment. You are still so blessed and this won’t change that. Sure, this will be hard and you will be scared and some days will be harder than others, but this will also magnify your blessings and bring them to light.

SONY DSC

This chubby, happy, healthy little baby will show you how blessed you really are. Blessings will come in all shapes and sizes, and now you’ll just be that much more cognizant when they occur.

They’ll happen that first night when your sisters instinctively feed, bathe and tuck in your toddler so you can cry alone with your husband. They’ll arrive in the hugs and love from your parents who wish they could take this hurt from you as badly as you wish to take it from your son. This lucky little fin will end up saving not only the baby with the cord wrapped four times around his neck during delivery, but maybe you as well, thanks to a repeat C-section. You’ll find comfort in the strength of your marriage and find that your husband is a more amazing father than you could have hoped for. Your colleagues will keep you busy during the last 20 weeks of your pregnancy, covering for you when you need it and distracting you along the way. Your friends will come and meet the baby, saying just the right thing and you’ll be so thankful that you’ll cry when they leave. Your son will show his cousin his lucky fin with so much pride you’ll ache at their innocence and pray he always knows this kind of acceptance. You’ll find incredible stories of amazing families and children that will inspire you and change the way you look at the world.

You’ll realize in the end that maybe we’re really the lucky ones after all. Feeling so much love and support and not taking it for granted might be the greatest blessing of all. And you’ll be reminded of this every time you pick up your cuddly, chatty, perfectly imperfect little miracle.

IMG_2738 (1)

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

767
767
9
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.