The Marfan Blog

We Found Our Family

Posted by The Marfan Foundation Nov 9, 2018

 

kids

For most people, family is the first group of people we know and trust. Newborn babies know their mothers by sound. Kids instinctively look to the people they trust for social cues. In a lot of cases, this tight circle is the family into which a child is born. In other cases, family is created over time with friends and neighbors who love and support one another like any family. 

 

Benjamin kissing Jayla

These types of relationships often take time to develop, unless you have Benjamin to point the way. Since he was three years old, Benjamin has been a pro at spotting his Marfan family and creating immediate bonds.

Shortly after Benjamin was genetically diagnosed with Marfan syndrome, his mom, Brandi, made contact with another Marfan family who happened to also live in East Tennessee. When they arrived at their meeting point, Benjamin went right to Jayla, the other family’s daughter, who also has a Marfan diagnosis. Benjamin took her hand and they started to walk inside, still holding hands. The moms say these two have been inseparable ever since.

Jayla remains Benjamin’s very special friend and his newfound family grows every time he meets more people in the Marfan and related conditions community.

Benjamin has gone to Family Camp twice and attended the Annual Conference in Atlanta. In these special environments, Benjamin is difficult to keep up with. He’s so busy running around meeting all his new family members!

Camps and the Conference have brought out this side of Benjamin that his family never saw before he was scooped up into the community. 

On an average day, he’s on edge, trying to be careful not to get hurt and worrying about how people might be looking at him. 

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But within this community, he can just enjoy and be a kid. No one asks about his height or questions him when he needs to sit down and rest.

Here, within his family, when he gets tired, a few other kids sit down with him, taking a rest together, and no one asks any questions.

Whether it’s doing camp activities, getting his face painted or joining a dance party, Benjamin becomes a different kid. He's relaxed and confident because, for once, he's just a regular kid doing regular kid stuff. 

The beauty of the Marfan and related conditions community is that the sense of family can extend to Benjamin’s mom, dad, and brother. When the family is within the community, they can all play together because, during those times, every activity is available to Benjamin. He and his dad and brother can all play the same games, or take on the same challenges. Nobody is left out.

Plus, the network of parents has been a lifesaver for Brandi, who now has a tight group of mom friends who are always just a phone call away. 

Families can come in so many forms and for Brandi, when they found the Marfan and related conditions community, she says, "we found our family."

For Benjamin, family is where he is comfortable and wholly accepted without question. When it comes to this community, Benjamin sees no strangers. Everyone is just another family member he maybe hasn’t yet met.

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Victory stories like Benjamin's are why your support of The Marfan Foundation is so important. Your gift means that kids like Benjamin can find family through community and flourish through the encouragement that comes from connecting with people who have a shared experience.  
 
Make a gift to The Marfan Foundation this Giving Tuesday to help us make sure that the Marfan and related conditions community can include every person affected by these conditions. 
 
 
 
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The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related disorders.

Topics: Marfan Community, Marfan Awareness, Quality of Life

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