EGL Genetics Blog

Batten Disease: A Community Strong in Resources and Love

Posted by Danyella Davis on Feb 18, 2016 2:00:00 PM

Thanks to Margie Frazier, Executive Director of the Batten Disease Research and Support Association for her blog contribution.

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I'm really grateful to EGL for featuring so many stories of families who live every day with rare disease. Our families represent the Batten disease community. This is an ultra-rare, autosomal recessive mutation that results in neurological and physical impairment with much shorter life expectancy for children and some adults. Visit the Batten Disease Support and Research Association website to learn more. 

Meanwhile, let’s talk about an incredible force.

A mighty sibling force. “Batten sibs” are incredible and inspiring. They take care of their affected brothers and sisters, sometimes have their own plans disrupted because of illness, and navigate life with incredible courage and fortitude. BDSRA has recognized these special sib needs for almost 30 years, especially at our Annual Family Conference.

Three days of magic.

Our Batten sibs never have to explain a thing, because all their peers ‘get it.’  Age appropriate sibling groups talk with researchers and physicians about Batten disease from a scientific and medical perspective. They get to ask hard questions about what it all means while in a safe environment. By creating this safe space, led by older adult siblings who are often bereaved, the younger ones get a chance to be heard in very different ways than they are used to in their day-to-day lives.

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Meet the Kennicott family. They are one of many BDSRA supporters that attends the annual conference each year. Thier daughter Bridget was diagnosed with LINCL.

Taking it to the next level.

As sessions evolved over time, sibs and their leaders knew that while small group discoveries were important, being able to share their stories and thoughts with parent groups was also important. Thus, the Annual Sib and Parent Panel was created. Each year, the room is full of siblings who share their stories. They ask the tough questions.

Tough Questions

Are my parents going to be alright?  How long will my brother live?  What’s going to happen to our family when he’s gone?  I’m afraid about leaving home for college because I feel like I’m abandoning my family.  Is it okay to tell my mom I’m depressed because my sister is sick? (I don’t want her to feel bad). 

Moms and dads engage in these conversations, too. Are my teens moody because of the stresses of teen life or because they are worried about their affected sibling or both?  How can I help them? What do my kids need that I haven’t recognized before? How do other parents handle special sib issues? 

As we continue to touch on pressing issues in the Batten community addressing family and medical concerns, we celebrate the lives and families of those that join us during the annual conference.

We are proud, we’re here and we love each other.

If you're looking for even more ways to get involved, join our webinar on Thursday, Feb. 25th @ 1EST. titled, "Leading the Charge: The Role of Patients as Chief Advocates."

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Register HERE

 

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