Michele James

| July 27, 2011
Michele James with her daughter Storme.

Michele James with her daughter Storme.

Angelman syndrome, a once little-known neurogenetic disorder affecting one in 15,000 people, is suddenly gaining a lot of attention in the U.S. Symptoms of the disorder have been alleviated in lab mice, which could lead not only to a cure for Angelman, but also other neurological disorders including Alzheimer’s and autism.

With scientists so close to a cure, funding research on the disorder is more important than ever. This summer, Vivint, a home security company, is giving away $2.5 million to charities through a Facebook voting contest, with the Foundation for Angelman Syndrome Therapeutics (FAST) currently leading in votes for a chance to win $250,000 for research.

We sat down with Michele James, who’s daughter has been diagnosed with Angelman’s, to learn about her daughter’s experience with the disorder and the Facebook contest that could help change the lives of thousands worldwide.

– Ashley Anderson

Tell us a little about your daughter.
Her name is Storme, and she is 20. She has Angelman’s syndrome. She was diagnosed at 11 months old in 1992, and when they diagnosed her, nobody knew exactly what it was. I was in dental school at the time and we got on the medical computer and started looking up journals and scientific articles. All I found were 322 kids in the world at the time (with the syndrome), but now I know that there are Angelman syndrome societies and families – it’s all over the world.

Storme has a lot of the classic characteristics of Angelman, but she’s lucky compared to a lot of kids with Angelman. She loves water – every Angelman child loves water. She’s always happy – another classic Angelman characteristic. She’s just a great kid. She can’t speak, but she understands a lot and has a lot to say.

How do you communicate with Storme?
Right now we’re working with the iPad. The iPad has a whole set of speech programs. There’s pictures and she can touch them and it will say whatever she wants the picture to say. She’s still learning that, but her favorite form of communication is gesturing; just a few signs she’s kind of picked up and made her own. It’s limited, but we get by with the basics.

What is the biggest challenge and/or blessing you’ve experienced from having a child with Angelman syndrome.
There’s fortune and misfortune. The biggest blessing is that she’s just so happy and she keeps you so grounded. You stump your toe, and she lays on the floor laughing. No matter what’s happening, she always brings a smile or something positive.

As for the challenges – just trying to teach her independence. It’s tough when you’re young and you have a child and you always think you know exactly what your child’s going to grow up and become. You have this idea of who they are and what they’re going to be – if they’re going to be like you or take after somebody else in the family. You quickly learn it’s completely opposite. I worry about her future because she’s long-term dependent. So, there are blessings and challenges all rolled into one.

What advice do you give others who have a child or know someone with Angelman syndrome?
Having an early diagnosis helps because there are certain behaviors we knew that would be classic. All the things we knew that she was likely to do, we were able to try to intervene and help out. My daughter is very lucky. She’s never had a severe problem with seizures, and she walks pretty well. Having that early diagnosis really helped though.

It’s a fight. You have to push and you have to battle, and it’s something that you have been charged with as a parent. You cry for these kids, but they have not a care in the world.

They’re happy! Just protect them and love them and see the joy that they see in their world. Don’t quit on them because they wont quit on you. They just keep loving, and you just have to give it back.

Tell us about the Facebook contest that FAST is currently leading.
Angelman syndrome is neck and neck in the contest. Voting is free and will be held until Aug. 27. You can cast your vote every day. You can also donate to FAST at www.cureangelman.org if you don’t have Facebook. But, on the Facebook voting page, they are currently matching donations. Each regional winner gets $100,000. Each national winner gets $250,000. That $250,000 could run a research lab for a couple of years. And we’re that close. It could be that $250,000 that pushes researchers over the edge.

Vote for FAST at www.vivint.com/givesbackproject/charity/43 or visit www.cureangelman.org for information or to donate to Angelman syndrome.

Contact writer Ashley Anderson at aanderson@voice-tribune.com.

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Category: The Spotlight

About the Author (Author Profile)

Ashley Anderson

Ashley spends half her time writing stories at The Voice-Tribune office and half her time out on the town conducting interviews, while occasionally dressing in wild outfits to fully immerse herself in the experience (aka Princess Leia at Comic Con). Ashley is a huge UofL fan and loves the Yankees and the Boston Celtics (she is fully aware of the irony). She hopes to one day outshine Erin Andrews on ESPN and enjoys running, Bardstown Road/Fourth Street, Breaking Bad and reality TV (she’s not ashamed to admit that).

Comments (4)

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  1. Laura Qualkinbush says:

    Perfect article, except it made me cry..especially where Michele was quoted saying “You have this idea of who they are and what they are going to be–if they’re going to be like you or take after somebody else in the family….” Try to put yourself there and walk in those shoes when you have this beautiful 11 month old precious girl in your arms and….
    But Storme is beautiful and so loved by her Mom and grandparents. She is a blessing and she is blessed to have that and to have a Mom who is working night and day for the FAST to receive the much needed $250,000 for research, not only for Storme but for all the “Angels.”

    Thanks for this article. I hope everyone and I mean everyone reads it and helps with their vote.

  2. Reine Boyd says:

    I know Stome and Michelle. Storme is such a joy to be around! I have always admired Michelle. I know it has to be hard sometimes. She loves Stome like no other. Michelle is very dedicated to FAST and winning this money for a cure not just for her angel but she wants it for all the special angels. Its so simple to help. It just takes a second of your time to vote each day. It doesnt cost a dime. If you vote and share with your friends Angelmans can win this money. To me there would be nothing more incredible to see this research find the cure. We can all me a part of it just by taking a few seconds a day to vote. Please spread the word and vote today!!!

  3. sharissa mummy says:

    Was lovely to read this it’s a good article and as Sharissa mummy I’m only at the beginning of our journey, I can cope with her silence and her massive struggle in her little life,but is unfortunately started. dreaded seizures

  4. Lois Carroll says:

    When my growing granddaughter, who has Angelman Syndrome, couldn’t be fitted with large enough bibs, I took out my sewing machine to solve the problem. I showed the resulting smock to friends, who loved it, and my project, Sophie’s Smocks, named after my granddaughter, was born so that many kids with AS could have a free smock.
    I buy new and gently used turtlenecks and trim. Supporters donate their time to cut and sew, and their money for postage and materials to keep the project ongoing.
    All the smocks are FREE for children or older with AS. I make child size 6 to adult XL.
    To get a smock, all you have to do is ask by emailing smocks@cox.net. Give me your child’s shirt size plus a name and mailing address including zip. I’ll send one as soon as I can. There’s no catch and no obligation. Though I accept donations, the smocks are free.
    Thank you,
    Sophies Smocks