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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Pre order your calendar now

LIMITED TIME OFFER

15% off in November!

All who donate $25USD or more during the month of November will receive a beautiful 2019 AЯRE Foundation Calendar.

From December 1, 2018 through January 31, 2019, anyone who donates $30USD or more will receive the 2019 calendar.

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Sünne van Gemert-Godbersen
Complex Care – An Administrative Headache!

And then another specialist is added to your child’s ‘team’ and sends you a 10+ page packet of paperwork to complete, which re-hashes all the information that you have provided to every other provider before. You arrive at the appointment and spend a large amount of time re-confirming and explaining everything in the paperwork. The specialist asks you to remember dates of procedures and tests, which seem lost in the ocean of your child’s countless visits. Don’t forget all the HIPAA & other forms you need to sign so that this information can be shared with every other provider involved.

Sound familiar?

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Strong Marriage

We asked Laura O’Shields if she would share her story about keeping your marriage strong through struggles with BOS child.  It’s a topic that we feel is difficult and not usually discussed. Thank you Laura for sharing your story!

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