http://www.signonsandiego.com/uniontrib/20080521/news_1m21braun.html

The San Diego Union Tribune

ONLY IN SAN DIEGO

Her pluck is a lesson in facing adversity

By Gerry Braun


May 21, 2008

So how has 2008 been working out for you?

Gas prices making you angry? The Padres got you bummed? Tired of listening to people complain about the housing market?

For a respite from all that, I've been checking in lately with Danielle Rose.

Against all odds, she's having a terrific year.

You'll recall Rose as the 28-year-old single mom who, because of her slurred speech and unsteady gait, is frequently mistaken for a drunk.

Her lack of coordination is the result of Friedreich's ataxia, a life-shortening disease that slowly destroys the nervous system while leaving mental functions intact.

Unless a cure is found, she'll probably end up in a wheelchair, like others in her family, her body nearly useless but her mind still bright.

So if she can be upbeat, anyone can.

Her condition is not visibly worsening, though she was having a rough day when we went out for lunch recently. Walking down the sidewalk, she careened into me a few times. “Sorry,” she said.

Eating a fruit salad, she dropped a cube of cantaloupe on her lap. “Sorry,” she said.

“Don't mention it,” I answered. “I do it all the time.”

Truth is, if I had a dollar for each time I dropped food on my lap, I'd be writing this from my dream home on Kauai.

Rose's goals are less far-fetched. And thanks to some remarkable people, they are coming true.

When I wrote about her in December, she was at her wit's end. She was embarrassed to leave home because of the glares and accusations directed at her – especially when she was driving with her 10-year-old son, Zach, an activity her doctors still allow.

After that column appeared, dozens of readers wrote in with suggestions for her, ranging from the practical (carry business cards explaining your condition) to the unexpected (insert magnets in your shoes to restore balance).

But one reader, Theresa O'Leary, took it upon herself to do something.

O'Leary recognized Rose from Carlsbad Youth Baseball, where their sons play. She showed the column to other baseball moms, and they decided to hold a bake sale to help Rose pay her medical bills.

The baseball moms prepared a lot of baked goods – I'm no expert, but I'd estimate their combined output at approximately three tons – and lined up donations from businesses, including a $1,500 credit from the dentist who put in Zach's braces. (A plug here for El Camino North Dental Arts.)

The event raised $2,000, but more importantly to Rose, it raised awareness of her condition. For the first time, strangers opened their hearts to her.

It was held at a busy baseball field on a Saturday. All three games were stopped so folks could hear about Rose, and about another development that has brightened her year: a golden retriever named Kudos.

Kudos will soon become Rose's service dog – a companion and helper, but also an emblem of her disability, her protection against public censure and misunderstandings.

Charli King, who has trained four dogs for a nonprofit called Paws'itive Teams, interviewed eight applicants for Kudos. She chose Rose because her need was so immediate.

Should Rose's condition worsen, King said, Kudos is trained to help around the house by bringing her objects, taking off her shoes and socks, opening doors and drawers, and turning on light switches.

Rose isn't at that stage, though. She's strong enough that she's slowly building a doghouse for Kudos.

Like architect Frank Gehry, Rose's work is no slave to convention. But the half-finished structure has undeniable charm, plus eight windows that will be hung with little drapes.

“Even though it's hard to envision right now, it's going to be nice,” she assured me after studying my skeptical look.

Feeding and caring for a dog isn't cheap, and Rose hasn't been able to hold down a job for some time. Which brings me to the third remarkable person who has made a difference for Rose this year – a longtime family friend, Sandra Nolan.

She and Rose are forming a business to sell collectibles and antiques on the Internet.

Nolan has a storage shed “the size of a four-car garage” that she's filled with furniture and fabrics. Rose has a college certificate in interior design, computer skills and is learning to reupholster. Together, they'll scour garage sales for items to “repurpose.”

“It's something I can do for years and years and hopefully maintain my skills,” Rose said while showing me a pillow case she recently sewed.

“I'm lucky that I can still do things,” she said. “If I couldn't get on my computer, or use my fine motor skills, I'd go nuts. I'd be a mother still, but I couldn't imagine being completely useless in every way.”

I was asked to speak at the bake sale, which is always a bit terrifying, but even more so when your audience isn't sure who you are, or why you are interrupting their games.

So I explained that the reason we want our kids to play sports isn't so they can hit a curveball, but so they learn lessons that will help them later in life.

And I told them the lessons they could learn from getting to know the guest of honor.

The first is to judge people by their character, not their appearance. Try as we might, that's harder than it sounds.

The second is to face your challenges with courage and dignity. And somehow, Danielle Rose makes that look easy.

If she can do it, we all can.

Gerry Braun: (619) 542-4563; gerry.braun@...

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

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