Ozzie

A Day to Shine Like Ozzie

April 26, 2022 marked Ozzie Deason’s first Angelversary, or one year since he passed away. On that day, friends, family members and the rare disease community came together to honor Ozzie’s memory with acts of kindness.

Ozzie’s parents Leah and Prime Deason marked the occasion on social media asking everyone to do something kind for others to mark the day. They also created a special Spotify playlist and handed out Blessing Bags filled with water, snacks and toiletries. Well, their request for kindness was answered in a BIG way.

Here’s some of Leah’s grateful post on social media:

“I don’t even know where to begin! It’s taken me a few days to decompress and soak it all in because it was such an emotional and joyful day! If you followed along on Tuesday, then you noticed my stories overflowing with nonstop shares from people participating and spreading joy to others through selfless acts of kindness. I wish I could share every single picture, but there are just too many. I saved everything in a highlight to revisit, so please check it out if you need a good dose of happy and to know that there are so many good things happening even during such dark times.

Here’s a tiny glimpse of what people did in memory of Ozzie:

☼ Handing out blessings bags
☼ Donations to various charities
☼ Gift cards sent to friends
☼ Paying it forward at coffee shops, smoothie bars and so many other places
☼ Lots of love to teachers, classrooms, secretaries and interventionists in the way of breakfast, snacks, thank you notes and supplies
☼ Goodies to healthcare workers, children’s hospitals, EMU patients, Ronald McDonald House families and fire stations
☼ Generously paying hotel bills for staff
☼ Handwritten notes placed in mailboxes of strangers
☼ Leaving large tips for service
☼ Handmade wreath delivered to the sweetest 95 yo lady who is home bound (her smile was so big!)
☼ Treats for Doggy Daycare
☼ Acts of self-care (being kind to yourself is a big deal!)
☼ Reading to kids at local libraries

I’m sure I missed many, but as you can see it was a day full of love and hopefully lots of smiles! It was such a special day, and I can’t thank everyone enough for honoring our sweet Ozzie. I think this is going to be our new tradition. I’m already looking forward to 4/26/23. From the bottom of our hearts, THANK YOU. It’s clear that Ozzie’s light is still shining bright for all the world to see!”

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A huge thank you for all who participated and showed the Deasons so much love on this difficult day. We are so grateful for a supportive and compassionate community that comes together in the most wonderful ways. May Ozzie’s light continue to shine and bring out the best in people now and always.

Published

June 9, 2022

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"Let's Blow Out Jordan's Syndrome": Event Raises Thousands for Research

It was a night to remember in Arizona last month, as Nancy De Orta and family put on an incredible fundraiser benefitting Jordan’s Guardian Angels! Together with their guests, more than $15,000 was raised and will go directly toward Jordan’s Syndrome research!

Guests enjoyed blow outs, great music, incredible décor and much much more and to top it all off, guests were outbidding each other just so that they could gift Avianna with the prize she was hoping for… check out what she took home below!

Nancy thanked all of the generous donors on social media saying, “We are beyond blown away by the love and support that you all have shown us not just at this event but throughout our journey. Thank you for helping us fight to find a cure/treatment! Thank you for being our angels.”

A big thank you for to the following sponsors for their generosity:
-Limitless Charcuterie
-Tony Camacho Photography
-Anthony Jensen (AKA DJ YKNOT)
-ICStrategy
-Tara at Scout & Cellar
-Bespoke Salon

From all of us at Jordan’s Guardian Angels, THANK YOU THANK YOU THANK YOU! We couldn’t do what we do without all of you!

Published

June 2, 2022

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A Rare Disease Day Spotlight: The Kelley Family

Living in our rare disease world has brought us so many emotions and feelings. Some stages last longer than others. From the beginning to current, you can see how these feelings have changed for us on our journey with Jordan’s Syndrome.

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Fear- my child is missing milestones. We’re afraid something might not be right.

Blame- are we, as parents, doing something wrong? Did I miss a prenatal vitamin during pregnancy? Are we not getting her enough nutrition? It must be because I can’t breastfeed her. She won’t suck properly, I must not know what I’m doing.

Desperate- prior to diagnosis we were so desperate for answers. We spent so much time searching for answers.

Discouragement- we are deep into seeing specialists. No one is able to help us. No one can get us answers. We don’t think we will ever have answers.

Isolation- we are out on this island alone. No one understands us, our needs, our challenges.

Excluded - we don’t feel part of the parenthood tribe. We aren’t invited to social experiences because others are aware of the differences which are becoming more obvious. No one wants to share their own child’s milestones, they think our feelings will be hurt.

Scared- we got the phone call from genetics. There is a mutation that is thought to be pathogenic. We are the 40th in the world. This is scary.

Angry- how could this have happened to us? We love each other. We wanted a child. We went to all of our OB check ups. Everything was fine.

Validated- we knew we couldn’t ever stop searching for an answer, even though it was normal for people to tell us “she’ll get there.”

Welcomed- we connected with our global family after diagnosis. Wow, it’s great to talk with others who seem to understand exactly everything we just said.

Novice- there is so much to learn. We know nothing about this. We have a million questions.

Hopeful- there is a research team!!

Appreciation- for all the simple tasks we take for granted, like walking and talking. Appreciation for health care workers, researchers, teachers and therapists.

Expert- soon we are educating others.

Mentors- soon we feel comfortable supporting and encouraging new members of the group.

Thankful- to be part of this great group of human beings and making new friendships.

Proud- to contribute to the research. To share our story and advocate. To watch our rare princess thrive.

Published

February 15, 2022

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A Rare Disease Day Spotlight: The Effinger Family

My husband Kyle and I have two beautiful children, our 3 year old son Liam and our 16 month old daughter Natalie. Natalie has the PPP2R1A gene mutation. After excitedly discovering we were expecting our second child, our 20 week scan led to fear and falling to the floor with the unexpected news that there were abnormal findings in our daughter’s brain.

The doctor found that the ventricles in her brain measured larger than they should and we quickly became high risk. We were offered termination of the pregnancy at 24 weeks as they shared they didn’t know how severely disabled our child might be. We weren’t going to give up on her. 

After her birth, we were relieved and anxious to start exploring what may be going on. As she began to fall behind in her development, and an MRI showed several other anomalies in her brain, her pediatrician and neurologist recommended early intervention services and she began physical therapy twice per week, which grew into speech twice a week as well as occupational therapy. The neurologist offered us genetic testing and after hearing the cost, we were uncertain when we would be able to pursue it.

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A friend set up a GoFundMe and connected us with the company Illumina who generously enrolled Natalie in their HOPE program and covered the costs of her genetic testing. After 3 months of waiting, we discovered she had a mutation in her PPP2R1A gene. We felt a relief to finally have an answer and a community to turn to for support. 

Published

February 15, 2022

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A Rare Disease Day Spotlight: The Waterman Family

Hello! We are the Waterman Family- Dad: Thomas, Mom: Blaire, Baby: Penny, and baby W expected May 2022, living in Portland Oregon. Penny is our first child, born December 2020. She came shortly after I was diagnosed with COVID and it has been a wild ride ever since!

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In April of 2021, when Penny was only 4 months old, she was laying on the couch, next to me, when I noticed what looked like a startle reflex, but then it happened a few times in a row and her eyes rolled up in her head which triggered me to start taking a video. When her dad got home from work, we decided to take her in to see the pediatrician.

Her doctor sent the video to the neurology team at Oregon Health and Science University- who advised us to go to the Emergency Room. Once there, we were admitted and set up for an EEG.

That was when we were diagnosed with Infantile Spasms, something neither we, nor our families, had ever heard of. With this diagnosis, it is important to try and identify a cause- which is often structural (identified in an MRI) or genetic and immediately start treatment. A few weeks later, we were told that Penny had a genetic mutation on her PPP3CA gene.

Our neurologist did not feel hopeful about the prognosis; informing us that, in the small number of patients that have been studied with this mutation, most were nonverbal, non ambulatory, had refractory seizures, and significant developmental delays. She did say that, due to the very limited information found on this rare mutation, it is likely that there is a wider range of outcomes.

This was obviously devastating, life changing, news.

Being the planner I am, I immideiately scoured the internet- reading the limited (2) studies, google searching PPP3CA to learn more about what this gene does (still do not understand it), and searching hashtags on social media. While we were doing all of this work, our amazing support system was doing a lot of research on their own. That was when my older sister found Jordan’s Guardian Angels and saw the PPP mutation and assumed they may be closely related.

Since connecting with Jordans and Carole, I have learned so much about the rare disease community and the advocacy that is necessary to make things happen in the research world.

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We have started our own Facebook group and have found about 13 families with this same mutation- from all over the world, we have worked to gather medical info/blood samples for the Simon’s Searchlight Database, reach out to researchers, start a website, create a social media presence, and support each other as much as possible.

Our hope is that we will continue to grow our network, push for research, share experiences with therapies/medications, and push for a CURE for- not only our rare genetic mutation- but for all rare diseases that affect our babies.

As for Penny, she just started her 8th medication, and is on the ketogenic diet, her seizures have improved but have not gone away. We do our best to remain hopeful and optimistic with each new treatment, but the reality is that we likely still have a long road ahead, but are extremely grateful for the community around us and the support we feel every day.

Published

February 8, 2022

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Racing for a Treatment or a Cure for Jordan’s Syndrome: Our Most Successful Fundraiser to Date!

It was a star-studded October evening in Houston, where families from around the world came together in a record-setting fundraiser to support our groundbreaking research.

Candice and Tim Huber, whose son six-year-old son Hutton has Jordan's Syndrome, hosted their annual fundraiser benefitting Jordan’s Guardian Angels. As in years past, the generosity of those attending was nothing short of incredible. This year’s event raised over $440,000 for a treatment or a cure for Jordan’s Syndrome, our most successful fundraiser to date!This year, those in attendance wore their Kentucky Derby finest and were treated to an incredible motivational speaker, a live and silent auction, great food, dancing and more.We cannot say thank you enough to Candice and Tim Huber whose tireless efforts are simply unmatched. Your generosity, enthusiasm and love for our children and our cause know no bounds. THANK YOU from the bottom of our hearts!

We also would like to recognize our partners who went above and beyond to make the event a huge success for our children.

Table Sponsors:
Larry and Sally Fogg
USI
Fire Safe
The Anderson Family
The Breeze Family
The Caldwell Family
The Fineberg Family
The Gill Family
The Hardy Family
The Hess Family
The Noreaga Family
The Purdy Family
The Torres Family
The Sims Family
The Young Family

Live Auction Donors:
EXTREME DUCK HUNTING – Larry & Sally Fogg
GEAUX SAINTS GEAUX – Jeremy and Katie Morgan along with Southwest Airlines
SEA GLASS – Painted By Rylie Caldwell, www.ryliecaldwell.com; IG: @ryliecaldwellart
NEW BEGINNINGS – Painted By Amy Fogg Reedy, www.amyfoggart.com; FB: Amy Fogg Art; IG: @amyfoggart
WINGED SOUL – Painted By Leslie Tammariello, leslietammariello.com; FB: leslie.tammariello

It goes without saying, but from the bottom of our hearts, we at Jordan’s Guardian Angels are incredibly thankful for the generosity and support. You truly are life-changers!

Check out our full image gallery below!

Published

December 1, 2021

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Our Global Community: Going the Distance for Jordan's Syndrome

One of the greatest things about being a part of Jordan’s Guardian Angels is watching families step up and take on hard tasks to benefit not only their child, but children around the world. Luke Larsson is no exception. He and his wife Sandy are Mom and Dad to Marley, a beautiful 10-year-old who has Jordan’s Syndrome.

We sat down with Luke to talk about how he went the distance for Jordan’s Syndrome research and the incredible sights he saw along that way.

“Marley inspires me to take on difficult challenges every day,” says Luke. “Like her, if I don’t reach my goal the first, second, or third time I keep trying.”

The Larsson family knows that it’s important to help raise money for JGA research to give Marley and others just like her a chance at a better life. So, when Luke had the opportunity to sign up for a 100-mile mountain race he jumped at the chance. He thought it would be an exciting adventure but also a way to raise money for an amazing cause.

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“Marley faces challenges every day too … too difficult for me to even imagine. Some days are better than others, but she keeps pushing forward.”

So, he set off! And he took the scenic route!

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Luke says it was an incredible experience and he gained knowledge along the way for his next attempt. He raised $550 for Jordan’s Guardian Angels research into Jordan’s Syndrome and for this we are TRULY grateful.

Great job Luke and thank you to the Larsson family for all of your efforts and for being incredible supporters of Jordan’s Guardian Angels!

Published

November 22, 2021

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Empowering our JGA Community: the Importance of Self-Advocacy

As our Jordan’s Guardian Angels and Jordan’s Syndrome community continues to grow, one of the conversations we often have is about self-advocacy: how to teach our kids to advocate for themselves and feel empowered to talk about their Jordan’s Syndrome diagnosis, but also their needs, wants, and desires. Research shows that when our children are bringing more to the classroom all of the child’s peers benefit from the learning opportunity.

Christina Janes, Director of Outreach and Awareness for Jordan’s Guardian Angels (JGA) recently sat down with Carole Bakhos, Project Director for JGA and we discussed how her daughter, Yara, is learning to self-advocate, how inclusive education is so important and how to get the community to accept differences as well.

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Christina: How has your experience with public schools been so far?

Carole: We’ve had positive experiences with public schools so far. The main reason is the fact that we realized early on that we need to be driving that education bus. As a result, my husband and I work on self-educating to have the tools to advocate for what our daughter needs. Our main goals: access to the curriculum and access to friends… sounds simple but a 40-page IEP (Individualized Education Program) is still necessary as most schools are not established with universal design methodologies and classrooms in place. Inclusive education should not be a fight or a privilege but a right. We wouldn’t change our children for the world. Is this world ready for what children with disabilities have to offer?

Christina: Do you think schools (at least in your area in Colorado) are doing enough to create an inclusive school community for children with disabilities?

Carole: Schools are doing a better job integrating children with disabilities, but are they being included? Inclusive education designs different access points to the curriculum for children that need additional help as well as those that need to be challenged. Decades of research shows the benefit of inclusive education for children with disabilities as well as their classmates. I want that for my daughter and my son alike.

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Christina: How do you think Yara’s experience will be different then when Mazin
(her Brother) goes to school?

Carole: While Yara’s little brother hasn’t started school as yet, I can tell you from now that his experience will be different from his sister’s. Jordan’s Syndrome has caused Yara to have to work harder for what comes natural to most. She walked around her 3rd birthday and first talked at 5. Before then, she used a walker to get by and sign language and a communication device to communicate. Even today, at 3rd grade, Yara has a 40-page Individualized Education Program (IEP) mostly full of accommodations that enable her to thrive fully in the general education environment.

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Christina: How much do you believe inclusive education has benefitted Yara in the long run?

Carole: I often reflect on our experience with Yara and how different she would be today if she was judged from preschool age and had to adhere to all these limitations and boundaries. By learning alongside her peers, Yara is able to read and do math at her grade level today. She comes home and shares about her day, most of her stories involve another student in her classroom… Through inclusive education, Yara was able to shatter all expectations and to amaze her teachers and peers just like she amazes us daily. I know, without a doubt, that none of that would have been possible without this rich educational setting she’s been emerged in.

Christina: I know Yara is a terrific self-advocate, and she recently had a chance to teach her classmates all about herself and her Jordan’s Syndrome diagnosis. Tell me about that!

Carole: Earlier this month, our family shared with Yara’s classmates regarding Jordan’s Syndrome. Yara wanted to be open about her diagnosis in an effort to normalize disabilities and look past the differences. The classroom read the book written by Jordan’s Guardian Angels “Let’s be Friends” about a little girl, Sarah, also living with Jordan’s Syndrome and prepared questions for us. Yara is leading her way along her peers to embrace their identities and celebrate the richness of diversity.

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Published

October 21, 2021

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JGA Dad Goes the Extra Mile to Raise Global Awareness, Funds for Research

Oh Poppy! To know her is to love her. Her smile just lights up the room.

Poppy Hill was diagnosed with Jordan’s Syndrome at 6 years old. Like many of the other children who have the gene mutation, Poppy has global developmental delays, hypertonia, as well as sensory, sleep, and behaviorial issues.

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It took countless tests, assessments, and therapies to finally get their answer as to why there was something happening to their child.

“Poppy has a gene mutation,” her Mother Michaela wrote on her blog, “at conception what should have been a circle came out as a square but on a microscopic scale. One small, fluke change in her DNA.”

But none of this keeps Poppy from flashing that bright smile and making someone’s day. Her Mom says empathy is her daughter’s super power.

The Hill family has been a big supporter of Jordan’s Guardian Angels and the groundbreaking research being done to find a treatment or a cure for Jordan’s Syndrome, but it was Rob who took that support a step further.

Poppy’s Dad decided at the end of 2020 that he would raise money for the research by walking, running, cycling, and swimming 2,715 miles. That’s the distance from the Jacksonville, Florida area where they live, to Sacramento, California where JGA is headquartered. Rob gave himself 121 days to complete the task and took off, completing 2,718 miles two weeks ahead of schedule.

His fundraising was so successful in fact he’s now taking the effort to a global level, challenging other families who have children with Jordan’s Syndrome to hit the road with him again in the coming months. Stay tuned for more on how to get involved!

Thank you to the Hill Family for all your support and for sharing your story!

Published

June 29, 2021

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JGA Family Member Chosen as Rare Champions of Hope "Rising Star"

One of the members of the Jordan's Guardian Angels global family is being recognized for her work and dedication in the rare disease community. Lexi Levine was nominated as a Rising Star for this year's RARE Champion of Hope Awards.

The celebration honors and recognizes true champions for rare disease, highlighting leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders.

Lexi's brother Barry had Jordan's Syndrome. 

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In her own words, Lexi describes the passion behind her work.

My whole life I have been described as “too hopeful.” When my brother Barry, who had Jordan’s Syndrome, would be sick my family and the doctors would be whispering behind me, about how they worried my hope clouded my ability to understand the severity of the situation.

But for me, I had spent my whole life watching my baby brother who was continually told no- practically every day- break the odds, and do exactly what doctors told us he never would; so I knew he was stronger than they thought and that their doubt, only made him stronger.

Now as a clinical research coordinator, I couldn’t help but smile when my team spoke about this one mother. She was determined to give her baby a normal life, even though he had a very severe form of a devastating disease. I remember how others believed she didn’t understand how sick her baby was, and that her hopes were unrealistic. She even expressed observing this herself. And when I told her how strong she was for all that she had been through- she said: “I’m not strong. What else was I going to do?” And that is exactly what my mom would always say about my brother.

My patient’s mom, and me- we both fully understood just how sick our loved ones were. But we choose to look past the illness, enjoy our time together, and fight like hell; and that cultivates and undying sense of hope in a person- I think I am lucky enough to have that trait.

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I am fortunate enough to work on some of the most cutting-edge clinical trials, in the field of spinal muscular atrophy (SMA). SMA is described as “the baby version of ALS,” meaning, that the muscles die over time. As a twenty-two-year-old, I ran an FDA audit on a trial I was the primary coordinator of; the drug was approved 3 months later. In its first five months, this drug saved 100 newborns, from this devastating disease.

I feel so proud to work for such a deserving population. I have never seen a more dedicated patient community; they truly are responsible for pushing this field forward, so quickly. Because this disease affects the muscles, most trials involve physical therapy assessments. And I get to record those sessions- and this is the absolute best part of my job. Because here, I see the science progressing.

Depending on the study, I get a month or two check in, for about a year or two, and watch as the medicine is making my patients stronger. I always say, I am willing to do whatever a patient may need. A lot of times, that means using my personal time. But then I go into a physical therapy session, where I as the videographer, and not as an “evil PT” (in that patients’ eyes, as they cry at the demands), become the patients’ favorite person in the room and it makes it all worth it.

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My biggest challenge in the rare disease would be resources and acceptance. First, resources- as I am sure you are aware, the resources in any rare disease group, are scare. However, I think a lot of time that is what leads to staff burn out. So many people start off so eager to make a difference, but then do not have the support at work to accomplish what they set out to do, and that can be exhausting. So, because I cannot magically create resources that don’t exist, it turns into a challenge of not over working myself to compensate.

The second challenge is acceptance from the general population. I was never once ashamed of my brother, his limited abilities, or the way he looked. I did however get enraged when people would just stare at him. Even worse if they would say an inappropriate comment or use the “R-word.” But in addition to this outright rudeness, there needs to be a wider spread desire to make a difference. I often feel that those who are not affected by something like a rare disease, only support it as much as they have to. Meaning, they may make a donation once, or share a couple posts, but they’re not willing to necessarily sacrifice for the cause.

But I think today, more than ever, the challenge of people not wanting to make a difference in an area that doesn’t affect them personally, is something that needs to change to further the field.

My undergrad honor’s thesis was investigating the correlation between head circumference and epilepsy severity in infants with tuberous sclerosis complex.

We found some exciting results we are getting ready to publish! Now I am a clinical research coordinator in the neuromuscular program at Boston Children’s Hospital, primarily working in spinal muscular atrophy. And by coincidence, we are working on an SMA biobank with Dr. Wendy Chung, who is leading the PPP research. I’m studying for the MCAT, and am hoping to go to medical school in the upcoming years.

Published

December 10, 2020

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1121 L St, Suite 100, Sacramento, CA 95814

Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.