On August 11, 2004, at the age of twenty-seven months, Olivia Hoffmann, six year-old daughter of Christine (Gootjes) and Eric Hoffmann, was diagnosed with Metachromatic Leukodystrophy (MLD).
In less than a year, this rare, terminal disorder caused Olivia to go from a healthy, smiling, bright-eyed little girl to a child who can no longer control any movement, talk, eat (she’s fed through a feeding tube), see, or even smile.
What is MLD? One of the metabolic disorders known as leukodystrophies, MLD is caused by a genetic defect that prevents cells from producing the enzyme arylsulfatase A (ARSA), which the body needs in order to break down a fatty substance known as sulfatide. Lacking the ARSA enzyme, sulfatide builds up in the brain and spinal cord, destroying the white matter, called myelin, which surrounds and protects the nerves. Without the myelin insulation, the nerves gradually quit working. This “demyelination” causes all of the problems of MLD, which include loss of mental, motor, and organ functions, and eventual death. Children like Olivia, with the late-infantile form of MLD (there are also juvenile and adult forms), may live 5 years, but so far the disease is always fatal. Bone marrow transplantation, which can slow down the progression of MLD, has been an option for some patients, but it will not be a possibility for Olivia. We continue to hope for new research breakthroughs in the near future. In the meantime, we are keeping Olivia as comfortable as possible, and enjoying every day we have with her.
If You Would Like to Donate to Olivia's Fund
Olivia's Fund Bank of America Account #0046 5849 8455 1952 S. Stapley Drive Mesa, AZ 85204 480-635-3360
Upcoming Events and Continuing Opportunities to Benefit Olivia
*** OLIVIA'S STORY ON TV *** 3TV's "Good Morning AZ" Thursday, August 14, 2008 Dan Davis visits Olivia and the Hoffmann family to find out all about Olivia and MLD... And Rolf himself of Rolf's Salon makes a housecall to give Olivia a very special haircut!
*** OLIVIA'S FUND MERCHANDISE *** COMING SOON! Please check back for past Olivia Fundraising t-shirts, cookbooks and bracelets in the Olivia's Fund Store.
*** MLD Foundation Postage Stamps *** Designed by our dear friend Kelly Quashnie, these beautiful stamps raise MLD awareness, and a percentage of each sheet purchased goes to the MLD Foundation. Please go to to www.zazzle.com/MLDFoundation* and click on the stamps to purchase. This is an incredibly easy way to spread the word about MLD and raise money for an organization working hard to find a cure! Please tell all your friends about this, and THANK YOU for your support!
*** THE RECIPE BOOKS ARE ALMOST GONE! *** There are less than a dozen books remaining, and since no more will be printed, this is your last chance to get this great cookbook! It is a beautiful 58 page recipe book containing 150 delicious and diverse recipes from Olivia's friends and family. They make a wonderful gift! Books can be purchased by sending a check in the amount of $20.00 per book (shipping included) to the address shown below. Please make your check out to "Olivia's Fund", and include the address where the book(s) should be sent.
Bon Appetit and Eet Smakelijk!
Please send your check to: Olivia's Recipe Book c/o Christine Hoffmann 8301 E. Cambridge Avenue Scottsdale, AZ 85257
Past Events to Benefit Olivia
*** OLIVIA'S STORY ON THE RADIO *** Saturday, June 14, 2008 The program is "Empowering Our Children", the topic is palliative care and Ryan House. www.ryanhouse.org Christine is a guest on the show, discussing Olivia's situation and how the Hoffmann family will benefit from palliative care and specifically Ryan House.
*** SECOND ANNUAL OLIVIA'S WALK *** Saturday, May 17, 2008 (Olivia's Sixth Birthday!!) at Tempe Town Lake www.oliviaswalk.org
To see lots of great pictures of Olivia's Walk '08, taken by Spark Magazine photographer Steve Gladysz (who generously donated his time and talent), please visit www.sparkmagazine.com/gallery_past.php and click on "Olivia's Walk". If you were at the Walk, there's most likely a picture or two of you!
*** FIRST ANNUAL OLIVIA'S WALK *** May 20, 2007 Kiwanis Park, Tempe
Click on the link below to see the May 19th Scottsdale Tribune... an article (front page!) about Olivia and Olivia's Walk '07 www.eastvalleytribune.com/story/90049
To view a tribute video of Olivia's Walk '07, produced by Steven Mohr, press play...
****** Wine Tasting at "Blame It On The Wine" Wine Bar
Garage Sale - Olivia's Neighborhood
"For the Love of Olivia" Photography Fundraiser
Benefit at VFW Post No. 3513, Scottsdale
Hike for Olivia
Spark of Hope Foundation 2nd Annual Bowl for Hope Benefiting Olivia and MLD
Garage Sale - Scottsdale
Tom Wolf "PF Changs Marathon"
Brian DeVries "PF Changs Marathon"
2 Garage Sales - North Phoenix
Garage Sale - East Phoenix
Dinner at Furio in Scottsdale
Angie and Theresa Haro's Hot Dog Stand
Garage Sale - Portland, Oregon
Tiki Party Raffle
"Mustard Plug" T-Shirt Sales
Journal
Wednesday, September 10, 2008 7:37 PM CDT
Hello-
Greetings from the Hoffmanns! We’ve been busy around our house - Olivia is back into her school routine, which is even busier than last year! She’s been fighting what feels like a never-ending cold since she was hospitalized for viral pneumonia at the beginning of July, but I think she’s finally near the end of it. The amount of congestion she’s producing has definitely increased, but I think this is going to be her new baseline. We’re suctioning a lot more frequently, and as always Olivia handles it like a trooper. The boys have been passing around a cold, and now Will is fighting an ear infection, but so far Olivia hasn’t gotten any worse. And she’s as alert as ever, paying attention to everything going on around her…especially when she’s in school! Olivia (who’s in first grade this year!) has school four afternoons a week (two with Miss Bari and two with Miss Danelle). She also has weekly visits with the school’s vision teacher, and with the physical and occupational therapists. In addition, she is continuing music therapy as well as physical therapy twice a week. Such a busy girl! But I think she really enjoys the activity, and any kind of positive stimulation we can give her is helpful. She has a great team of teachers, therapists and nurses who really care about Olivia and making her days more enjoyable. We are so thankful for all of them.
Will and Carter are doing great, and growing by leaps and bounds. I’ve forgotten how quickly vocabulary develops at this age! They’ve got new words every day, just like Olivia did when she was almost two. The boys really enjoyed their airplane trip to Nan and Pop’s in Michigan last month (and they were actually quite good on the plane…I was more stressed than they were!). We had a wonderful week with beautiful weather at my uncle’s cottage on Lake Michigan, and we were able to see lots of family. Also, my brother and his wife were just here for a week. We had a great time with them, and Will and Carter are still taking about Uncle Mark and Aunt Kathy. They still love to spend time hanging out with their big sister, reading books to her and putting on musical puppet shows. It’s so sweet watching them interact with her…and she almost always brightens up when they’re around!
Hope you are all enjoying this busy time of year. Thanks as always for your support. We appreciate you keeping Olivia in your thoughts and prayers!
http://www.mldfoundation.org Learn more about MLD and the goals of the Foundation: "We C.A.R.E., facilitating Compassion, increasing Awareness, influencing Research, and promoting Education." http://www.stennisfoundation.org A great organization dedicated to promoting research for a cure. http://www.sparkofhope.org Friends' fundraising event held in March '05 to benefit Olivia and MLD research.
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