Our Global Community Archives – Page 2 of 2

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.

“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!

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!

Our Global Community - 11/22/2021

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.

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.

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.

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.

Our Global Community / Uncategorized - 10/21/2021

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Our Global Community: Marley Mae 5K Raises Thousands

From Washington State, across the country and around the world, families joined our race for a cure for Jordan’s Syndrome.

The Marley Mae 5K and Family Walk, a virtual walk and fundraiser organized by a Washington family whose daughter is diagnosed with Jordan’s Syndrome, raised thousands of dollars to help fund our groundbreaking research effort. Dozens of participants took part in the virtual race, a race that can be run or walked from any location around the world.

Luke and Sandy Larsson created the event in support of their daughter, Marley, and other children impacted by Jordan’s Syndrome worldwide. Jordan’s Syndrome is a rare genetic mutation on the gene PPP2R5D that causes developmental delays and other symptoms, and is linked to autism, Alzheimer’s and cancer. There are now 100 cases worldwide. Jordan’s Guardian Angels is leading the research for a cure.

Last October, the Larssons wrote on the event’s Facebook page:

“This past winter, after 6 years of not having a diagnosis for our little girl, we finally got one from Seattle Children’s. Marley’s genetic team informed us that they figured out what was going on and explained all the research about an abnormality in her PPP2R5D gene. We also learned that Marley was the 65th person in the world to be diagnosed with it. After being in the dark for 6 long years and thinking Marley was the only one with this mystery problem, we were immediately in contact with other families from around the world. It was amazing!”

The Larssons created a website, t-shirts and more to help spread the word about our amazing journey – and in mid-May, people all over the world took part. It is yet another inspiring show of support and generosity – in a journey we couldn’t make without all of you.

After the two-day event, the Larssons wrote, “Thank you so much for helping make the first Marley Mae 5K and Family walk a huge success,” the Larsson family wrote on the event’s Facebook page. "We can’t thank you enough for all the support. We couldn’t have done it without you.”

The event raised $3990! Congratulations to our Marley Mae 5K winners:

First Place: Steven Hall (21:25)

Second Place: Erin Mcconnell (25:08)

Third Place: Jennifer McConnell (25:48)

Silliest Group Photo: The Hadley Family

Best Photo: Ann Marie Keeler

Our Global Community - 05/31/2019

Our Global Community: Students Go Above & Beyond

In today’s edition of “Our Global Community,” we’re celebrating the incredible, life-changing bond between 9-year-old Francis Grant, one of the 60-plus children in the world diagnosed with Jordan’s Syndrome, and his fellow classmates.

Francis has attended Letterkenny Educate Together in Donegal, Ireland, for three years. The elementary school fosters an open, inclusive atmosphere for students to learn and grow together. But it wasn’t an easy choice to send him to school.

“Taking Francis into school was one of the hardest decisions to make for me,” said Francis’ mom Gina in a post to the school’s Facebook page. “I had him at home with 24/7. The thought of him being with strangers – and because he has no communication – I was heartbroken thinking he wouldn’t be able to tell me he was scared or lonely.”

What happened next is a testament to the power of inclusiveness. Francis’ classmates didn’t turn away. They welcomed him with open arms into the school’s community. Their unwavering support has helped Francis grow in leaps and bounds.

"He has changed so much in his 3 years there,” Gina said. “He is accepting social situations with ease now. This would never have happened before. He is far more aware and for the first time this past two months, giving hugs. He enjoys being with the other students so much, who play with him and read to him daily. He tries to feed himself and do what they do. It’s great to watch. He is looking at books and interacting with people and toys, which he never did before starting school."

Recently, Francis’ classmates won a contest, and instead of keeping the prize money, they gave it to his teacher to pay for extra resources for him. They also made Francis a sensory mat, a key developmental tool.

“These students and this school has helped us all see the boy behind the silence,” Gina said. “I’ll always be grateful they accepted him and his family with open arms, and they have shown to us that inclusion can – and does – work.”

Our Global Community - 07/03/2018

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

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Empowering our JGA Community: the Importance of Self-Advocacy

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Our Global Community: Marley Mae 5K Raises Thousands

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Our Global Community: Students Go Above & Beyond

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