On August 11, 2004, at the age of twenty-seven months, Olivia Hoffmann, six and-a-half 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 and Her Friends
*** THIRD ANNUAL OLIVIA'S WALK *** A 5k Walk/Run benefitting the MLD Foundation and Olivia's Fund ...and a celebration of Olivia's Seventh Birthday! Saturday, May 16, 2009 Tempe Town Lake Check-In at 7:30am; the Walk begins at 8:00am. For more information, and to register or make a donation, please visit www.oliviaswalk.org
*** OLIVIA and RYAN HOUSE *** Ryan House, scheduled to open in the Fall of '09, will provide respite, care and support to families and children like Olivia with life-limiting conditions in a home-like setting. Please visit www.ryanhouse.org for more information, and www.ryanhouse.org/web/olivia_ann_hoffmann to read Olivia's story on the Ryan House website.
...On the Radio: Saturday, June 14, 2008 The program is "Empowering Our Children", the topic is palliative care and Ryan House. 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. To listen to the broadcast go to www.empoweringourchildren.com/programschedule.aspx Select year 2008, then scroll down the page and click on "June 10 - Ryan House - Dr. Tressia Shaw and Christine Hoffmann"
...In "Raising Arizona Kids" Magazine: "House of Hope" The October '08 issue features a story on Ryan House, including a discussion with Christine (and a beautiful picture of Olivia!). www.raisingarizonakids.com/index.php?page=0810_contents
...On Television: Channel 12's October 10th Evening News with Lin Sue Cooney and in conjunction with "Raising Arizona Kids". To view the broadcast go to www.azcentral.com/12news/rak and click on "House of Hope".
*** 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!
*** "RECIPE FOR LOVE" COOKBOOKS *** 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
***"SPARK OF HOPE" WRISTBANDS*** "Always keep a Spark of Hope in your heart and a wristband on your wrist!" Originally created for Spark of Hope's March '05 Benefit for Olivia, these wristbands are a daily reminder to never let go of Hope. In Olivia's signature green, they make a great gift for all ages.
Five dollars each, or five for twenty dollars (shipping included). Send a check (payable to "Olivia's Fund") to Olivia's Wristbands c/o Christine Hoffmann 8301 E. Cambridge Avenue Scottsdale, AZ 85257 Past Events to Benefit Olivia
*** 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
Monday, May 4, 2009 1:01 AM CDT
Hello family and friends!
We hope this finds you all doing well and enjoying some beautiful Spring weather. It’s hard to believe it’s already May, and Olivia’s seventh birthday is just around the corner – the 17th! We are thrilled beyond words that our little angel has made it this far, and we feel so fortunate to be celebrating another birthday with sweet Olivia.
We’re all (hopefully) back on the road to recovery after a long stretch of illnesses. Shortly after I wrote the last journal entry, Will and Carter were diagnosed with bronchitis and double ear infections. Of course Olivia struggled with an infection as well, and we put her on yet another round of antibiotics. All three kids were healthy for a week or so, and then we got hit with another round of double ear infections, and Olivia began spiking high fevers on a daily basis. After another round of meds, which we just finished up a few days ago, everyone appears to be healthy. Hopefully we will stay that way! Of course the good news is that we’ve been able to keep Olivia out of the E.R. and from being admitted into the hospital, thanks to the wonderful care of her doctors and Fran and Linda, her nurses here at home. Through all of this we’ve kept up her schedule as much as possible, and she still brightens up when her teachers and therapists come over. Even if she’s feeling lousy, she relaxes and seems to really enjoy her lesson or therapy session… I’m sure it’s a welcomed distraction for her! Soon “school” will be done for the summer, but we’ll continue on with physical therapy twice a week (with one session per week in the pool, if Olivia feels up to it) and music therapy once a week. And hopefully we’ll be able to plan some field trips (like to the Children’s Museum) as long as Olivia is healthy enough.
In just a week Nan and Pop will be here from Michigan to help us celebrate Olivia’s birthday, and we can’t wait! Olivia love their visits – Pop plays the piano just for her, and Nan always has her morning coffee in Olivia’s room…quality quiet time before those crazy little brothers get going! And of course I love to have my parents here because of all the extra help they give. Carter and Will are sweet little boys who love their big sister, but they are definitely two-year-olds who keep us on our toes. Never a dull moment at our house! It’s exhausting, but we’re so grateful for our children – they each are such a blessing.
We’re looking forward to the Third Annual Olivia’s Walk, which is happening on Saturday, May 16th. We sincerely hope as many of you as possible will join us that morning to celebrate Olivia’s big day, and raise money for the MLD Foundation and Olivia’s Fund. We’re thrilled that Olivia is turning seven, and to celebrate it with lots of our friends will make it even more memorable…how special it will be for Olivia most of all!
Thank you for all of your support. We are so blessed to have the family and friends that we do, and we are grateful. Please continue to pray for Olivia to have more good days, and keep the positive thoughts coming her way.
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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