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Status update on Nathan & Dillon

admin — Tue, 14 Jul 2009 17:02:17 +0000

We apologize for not updating this website as often as we would like and appreciate everyone’s patience as we know you want to know how they are doing. Nathan continues to struggle with his body. He is able to get on all fours with difficulty and involuntary muscle contractions are making it very difficult for him to manipulate objects with his hands.

Dillon is doing very well, so well in fact, that we decided to run genetic testing on him to confirm the diagnosis. Unfortunately, the test confirms he has the same genetic mutations as Nathan. We are told, that as every child is different, presentation of disease varies dramatically from person to person and even from sibling to sibling.

In a tremendous effort to continue fund raising, Nicky Holender is running the San Francisco Marathon on July 26th. Nicky and Isabelle have three beautiful children, two who attend Nathan’s school, and we can not thank them enough for their support and compassion. According to Nicky, he has never run more than 3 consecutive miles in his life so we wish him all the luck in the world and thank everyone for supporting him with pledges to help support Nathan and Dillon!

Regression

admin — Thu, 19 Mar 2009 17:01:05 +0000

We have been back from Korea for almost a month now. Nathan seemed to do well while we were there, but since we have returned the regression has continued and he now has a really hard time moving. He cannot walk by himself and he does not crawl on the floor anymore. Even walking while holding hands has become really difficult and strenuous. Dillon is not showing any signs of regression yet.

We believe the positive effects of the treatment in Korea were very temporary. We are now waiting for approval to test a new drug that might help the boys, but we will write more about that soon.

If we cannot get approval for the drug, we might have to go back to Korea and have the treatment full-time to try to keep him stable until direct brain injection of stem cells is available, expected within a year or two.
We really have high hopes that the drug will be approved for use soon as we do not have a lot of time.
We would like to thank Marlborough School and the Sparrow Clubs for “adopting” Nathan and Dillon as part of the Sparrow Clubs school project!

News from Korea

admin — Sun, 04 Jan 2009 16:59:34 +0000

We would like to thank everyone for making it possible for us to be here in Korea.

Nathan has started treatment and is getting stem cells harvested from Lisa 2-3 times a week, and he does appears to be doing a little bit better after each session.

We had to miss a week of treatment as he caught a bad cold but he recovered quickly so treatments resumed. We will start gene therapy soon and have been told that we might have to stay in Korea a little longer than expected.
We believe we are in a good place and the boys are in the right hands for the moment.

Thanks again everyone for your support, we wish you a happy new year and may 2009 be filled with joy.

The Robaut Family

Tax Deductible Donation Through the Sparrow Foundation

admin — Sun, 14 Dec 2008 16:58:11 +0000

With the help of the Sparrow Foundation, all donations made by check are now TAX DEDUCTIBLE! Any donations that have already been made by check will be included on a retroactive basis.

Tax deductible donations can be made by check made out to Sparrow for Nathan and Dillon.

Send to:

Nathan and Dillon Robaut
P.O. Box 1158
Culver City, CA 90232
For more information about Sparrow Clubs visit www.sparrowclubs.org

We are off!

admin — Sat, 13 Dec 2008 16:58:53 +0000

The family is scheduled to leave on Tuesday 12/16 and will stay overseas at least 4 weeks.
The results of the fundraising has been tremendous but we are still a long way from our goal, so WE STILL NEED YOUR HELP. Everyone is filled with hope as they depart on this part of their journey. Please keep them in your thoughts and prayers.

Treatment Costs

admin — Thu, 20 Nov 2008 10:57:10 +0000

Although a charitable organization may still be in the works, the process will take some time and the family has an immediate need. The Robaut’s are currently planning to go overseas for gene therapy treatment for Nathan and Dillon. Gene therapy is not yet offered in the United States and seems to offer the most hope at the current time. Initial costs for gene therapy treatment are estimated at $50,000 per child. It is anticipated that each child may require multiple treatments over the course of many months. We believe the first treatment may start as early as 12-10-08 and the family will live overseas for a period of 5-6 weeks.

Diagnosed with Tay-Sachs

admin — Tue, 18 Nov 2008 13:51:06 +0000

Lisa and Sebastian Robaut’s 3 year old son, Nathan, was diagnosed with juvenile Tay-Sachs two weeks ago. Tay-Sachs is an extremely rare and fatal genetic disease. Due to the genetic nature of the disease, Lisa and Sebastian’s 4-month old baby, Dillon, was also tested. Despite the odds, Lisa and Sebastian received the unimaginable news today that Dillon also has juvenile Tay-Sachs. Although there is currently no known cure for Tay-Sachs, Lisa and Sebastian are exploring all of their treatment options including umbilical cord blood transplants currently being performed at Duke University as well as potential gene therapy and stem cell transplants being performed outside the United States. In addition to the enormous emotional burden that Lisa and Sebastian are facing, treating and caring for two children with Tay-Sachs will certainly involve a tremendous financial burden. We are currently exploring setting up a charitable organization dedicated to assisting families dealing with Tay-Sachs where tax deductible donations may be made and hope to have more information on this in the next couple of days.