Family Spotlight from Norway!

Posted on April 22, 2014 by 11qfamily

Meet our 11q Family from Norway!

Vera & Knut-Henrik
Leon – age 5 (JS)
Maria – age 2

We live in Norway, and are as far as we know the only family with JS in our country.

We like to be with our family and friends. We love to travel, special to warm and sunny locations. Both of the childeren love the water and swimming.
We (the parents) love to make food and experience with all of the worlds kitchens 😉
Leon loves his Ipad, music and strange sounds.

Texas Family Spotlight!

Posted on April 17, 2014 by 11qfamily

Parents: Ryan and Amy Bodiford

Man of the House: Tyler 2 ½, 4q and 11q interstitial deletions

We live in Houston, TX

Tyler enjoys walks, being out of the house in public places and hanging out with all of our families. He is always smiling during bath and jammie time (just wish he would love sleeping time too). He absolutely loves TV time – his favorites are Bubble Guppies, Monsters Inc and Frozen!

He has many of the characteristics of Jacobsen kids and a few unique ones too. His newest diagnosis is his large scoliosis curve. He will be getting his first of many Mehta cast at the end of the month. We hope he adapts quickly and will be happy and playful after a couple days.

Meet the Kuhns!

Posted on April 10, 2014 by 11qfamily

Erica and her son Kylan both have Jacobsen Syndrome.

Hi there! My name is Erica and I am 34 with JS and my sons name is Kylan he is 4 with JS and HLHS (hypoplastic left heart syndrome.) My husbands name is Paul. We live in Ohio.

Kylan has had two open heart surgeries and a few heart catherizations. He has his last open heart surgery coming up. I found out I had JS after Kylan was born and his blood wasnt clotting properly. They did a bloodwork and realized he had JS and then the doctors asked to get me tested and sure enough I had it.

I have a full time job as a hotel logistics coordinator booking hotel rooms for pilots all over the US and some international. I graduated form college with a degree in Associate of Applied Business specializing in Hospitality Management. Kylan attends pre school 4 days a week and receives OT, PT and speech. He is doing very well. He loves going to school. As a family we like to go on little getaways.

On Mondays daddy takes Kylan to Chik-Fil-A after school because its daddy day and mommy does the same on Thursdays after school because its mommy day. This is just a special thing we started this year after days that we pick him up from preschool. Lala which is grandma picks him up on the other two days he attends school until mommy or daddy gets off work. We also love to go to dinner as a family. In the summer we like to talk walks with Kylan and go to the park. Mommy also takes Kylan to the pool. He loves going to the pool. Kylan loves playing with other kids his age too.