Go with the flow - a vacation with special needs

We asked Laura O’Shields if she would share her story about vacation with their special needs child Kylee: I had been on cruises before, but I was really nervous about taking Kylee on a cruise.  We were going to be in the middle of the open ocean with no hospitals or pharmacies nearby. To make things worse she had been hospitalized only about a week prior to us leaving …

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Throw Out the Expectations Playbook and Visit Wonderland

One of the worst things you can say to a special needs parent is “I’m sorry”.  It is based on the assumption that everyone should have the same expectations for the way their lives should be lived and that anything different is a tragedy.  I am asking you to throw out the expectations playbook and think about the world differently.

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Laura BadmaevComment
Getting a Specialized Bed

It took nearly two years to get our health insurance to approve a SleepSafeBed for our 7 year old daughter, who suffers from Bohring-Optiz Syndrome. We now have the SleepSafeBed and cannot imagine life without it. This special bed is perfect for a child with special needs.

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Fighting Respiratory Illness

Fighting Respiratory Illness

Laura Badmaev: It’s that time of year again.  Germs are everywhere and sickness spreads quickly.  What may be a simple cold for a normal person impacts our ASXL children differently.  Their neuromuscular and respiratory challenges make it difficult to breathe and then they end up in the hospital where they can be exposed to even worse infections – some can become life threatening.

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Laura BadmaevComment
Gene Therapy & Editing

Gene Therapy & Editing is an evolving discussion … with lots of questions …
We asked Dr. Loren D.M. Pena six questions from families about Gene Therapy & Editing. Dr. Pena is a clinical geneticist with a strong interest in new gene discovery and development of new therapies for rare disorders. As an investigator in the Undiagnosed Diseases Network at Duke, she was part of the team that described the initial cohort of individuals with ASXL2 disorders.

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