* * * * * A service to celebrate Olivia was held on December 21, 2010 at All Saints' Episcopal Church in Phoenix.
Contributions in memory of Olivia may be given to the MLD Foundation, 21345 Miles Drive, West Linn, OR 97068 or www.mldfoundation.org/donations.html
* * * * *
On August 11, 2004, at the age of twenty-seven months, Olivia Hoffmann, 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 could no longer control any movement, talk, eat (she was fed through a feeding tube), see, or even smile.
At the age of eight and-a-half, Olivia gave up her struggle with MLD that she fought so courageously and with such grace and peace. We are so proud of Olivia and feel blessed beyond words to be her parents.
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 was not a possibility for Olivia. We continue to hope for new research breakthroughs in the near future. In the meantime, we did our best to keep Olivia as comfortable as possible, and enjoyed every day we had with her.
Recent Events and Continuing Opportunities to Benefit Olivia's Friends
*** REMEMBERING OLIVIA *** Celebrate Olivia on what would have been her 13th birthday!
Please consider making a donation in her memory. Your gift will support the Foundation and other MLD families who are going through the devastating journey that Olivia and her family did.
*** OLIVIA'S NIGHT *** benefitting the MLD Foundation
May 11, 2012 at The Duce in downtown Phoenix
Thanks to everyone who made this an incredibly fun and successful evening, including all of our silent auction donors and participants, the band Sugahbeat for providing the music, and The Duce for providing a great venue. Search “Olivia’s Night” on facebook for details, pictures and updates.
It was a FUN night, raising money for a GREAT cause… and celebrating OLIVIA, who would’ve turned ten on May 17, 2012.
THANKS FOR MAKING IT A GREAT EVENT IN MEMORY OF OLIVIA!
*** FIFTH ANNUAL OLIVIA'S WALK *** A 5k Walk/Run benefitting the MLD Foundation. Saturday, May 14, 2011 Tempe Town Lake, Tempe, Arizona.
In 2010 alone, within the Foundation's world-wide family, 25 MLD-affected kids including Olivia passed away. Please GET INVOLVED by participating or making a donation to help increase awareness of this awful disease, and raise much-needed funds for the MLD Foundation. They do an outstanding job supporting MLD families around the world and working with research institutions that are searching for a cure.
This event is over but you can still make a donation! Go to the Registration page at www.oliviaswalk.org to donate.
Thank you!
*** MLD FOUNDATION POSTAGE STAMPS *** Designed by our dear friend Kelly Quashnie, these beautiful, award-winning stamps raise MLD awareness, and a percentage of each sheet purchased goes to the MLD Foundation. Please visit 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 support MLD families and research for a cure!
*** "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 to Olivia's Wristbands c/o Christine Hoffmann 8301 E. Cambridge Avenue Scottsdale, AZ 85257
*** EMPOWERING OUR CHILDREN Radio Show *** September 22, 2009 Olivia's Mom Christine, and Dean Suhr, co-founder and president of the MLD Foundation, join Dr. Stephen Blum on this nationally aired talk show to discuss Olivia's story, MLD, and the MLD Foundation.
*** OLIVIA and RYAN HOUSE *** Ryan House provides respite, care and support to families and children like Olivia with life-limiting conditions in a home-like setting. We spent a number of weekends at Ryan House and it was amazing. Anyone with a situation like ours must experience it! Please visit www.ryanhouse.org for more information, and www.ryanhouse.org/olivia_ann_hoffmann to read Olivia's story on the Ryan House website.
...On the Radio: June 10, 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, palliative care, and 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 Oct. 10, 2008's Evening News with Lin Sue Cooney features an interview with Ryan House's executive director Nancy Martin, Christine, and Olivia. To view the broadcast go to http://www.azcentral.com/video/#/House+of+Hope/33958326001
Past Events to Benefit Olivia
*** FOURTH ANNUAL OLIVIA'S WALK *** A 5k Walk/Run benefitting the MLD Foundation and Olivia's Fund, and a celebration of Olivia's Eighth Birthday! May 15, 2010 Tempe Town Lake
Thanks to everyone who helped to make this the biggest and best OLIVIA'S WALK yet!
*** 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! May 16, 2009 Tempe Town Lake *** 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! View it by visiting http://www.azfamily.com/archive/55074982.html www.rolfssalon.com/giving_back/olivias_story/
*** SECOND ANNUAL OLIVIA'S WALK *** May 17, 2008 (Olivia's Sixth Birthday!!) at Tempe Town Lake
*** FIRST ANNUAL OLIVIA'S WALK *** May 20, 2007 Kiwanis Park, Tempe
To view a tribute video of Olivia's Walk '07, produced by Steven Mohr, press play...
****** "Recipe for Love" Cookbook
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 11, 2015 10:44 PM CDT
A letter to Olivia from her brothers:
Dear Olivia,
We miss you and we love you. We think about you all the time and wish you were here. We remember playing in you room next to your bed while you were resting. We remember helping to take care of you by giving you medicine and food in your feeding tube. We always liked rubbing your arms when they would shake and you couldn’t stop them. We remember how you smelled. We remember helping clear your nose with your suction machine. We remember snuggling with you in your bed and reading our favorite books to you. We remember all the people who would come over to our house to help take care of you.
Even though you’re not here with us, you are always our big sister and we love you.
Your gift will help millions of people stay connected with friends and loved ones during challenging times.
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