By: Damon Bedillion

Damon Bedillion — Thu, 28 Apr 2016 01:37:10 +0000

What a fantastic story! It serve as a wonderful example of how those with exceptionalities (I have cerebral palsy myself, especially children, can sometimes break down barriers others cannot.

If you who read this feel so inclined, I would like for you to consider reading a short article I have written, about family members of mine who are attempting to attend a conference for their son, Caleb, who has CDKL5. Below you will find some information about Caleb and a link to the GoFundMe I have started for his parents to, hopefully, attend a CDKL5 conference. Thank you very much.
Sincerely,
Damon Bedillion

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. It is an orphan disorder, with about 600-1,000 estimated worldwide; however, more children are being diagnosed as awareness of CDKL5 spreads. Eight-year-old Caleb cannot walk, cannot chew food, and is legally blind. The most prominent daily concerns for Caleb are his general safety, and his frequent seizures (with can range in number from 3-30 in a single day) and his weak immune system. Caleb was hospitalized in 2014, suffering from multiple infections.

Because CDKL5 is so rare, Caleb’s parents need to be able to attend conferences on their son’s disability. It is imperative they are able to learn about vital treatment method from doctors and research, who are CDKL5, and network with other parents, whose child have the same disability. The family is busy welcoming Caleb’s baby sister, Joelle, who was born on April 22nd, 2016. That is why they are hoping to plan a trip to next year’s conference. They just need the funds necessary to make that hope a reality. You can contribute to GoFundMe I have set up for Caleb’s family at gofundme.com/285as2kc.

Thank you so much, in advance, for your help.

The site includes a categorical breakdown of the family’s budgetary needs for the trip.

If you have any questions, please feel free to contact myself (I am Caleb’s uncle) at damon.bedillion@maine.edu or his father, Kevin, at, ksmall75@gmail.com.

By: teeps

teeps — Sat, 09 Apr 2016 15:36:08 +0000

Years ago, when the kids were little (we raised them with no religion, although they were baptized as newborns so my mom could sleep at night — I though this was the right thing to do until Abbie, as a 10 year old, asked me, “Who are Adam and Eve?” and I thought, hmm, maybe my mom is right about there being *some* value in a religious education/I take my catechism for granted), we went to a bar mitzvah for a neighborhood boy. It was amazing, the first for my husband, and he leaned over to me during it and whispered, in total sincerity — he’s a country boy from west Nebraska — “Why aren’t we Jewish?”

You know I am suspicious of all things organized except labor — but I LOVE that you and the girls are doing this and can’t wait for their big day.

Comments on: The Jewish Thing

By: Damon Bedillion

By: teeps