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“They Only Have A Childhood To Live A Liftetime“

As a society we are somewhat familiar with common diseases such as Cystic Fibrosis, Multiple Sclerosis, and Muscular Dystrophy. However, a name like, “Niemann-Pick Type C disease” leaves you wondering.

As of now, there is no cure or effective treatment for NP-C disease. Although medical research takes time, and funds are limited, research is making progress. In the future, the lives of these precious children may be saved. Including our precious Brisan and Parker.

It can only happen through personal and corporate contributions towards NP-C research in pursuit of a treatment for this life-robbing disease. Aggressive research into Niemann-Pick Type C disease will not only be the pathway to its eventual cure but it will also provide gateways into other related disease including other cholesterol-metabolism disorders such as atherosclerosis and stroke, as well as adult onset Alzheimer’s. There are other relations to Cystic Fibrosis, Duchenne Muscular Dystrophy, and HIV-Aids. Could imagine the possibilities of an effective treatment?

Your help is needed now to save the lives of our precious Brisan and Parker, and all children afflicted with this disease around the world by unlocking the mystery of this and other storage diseases.

The Niemann-Pick Children’s Fund was created in honor, love, and hope for Brisan and Parker. Our goal is to do our part to support research through fundraising, promote awareness and education, give direction for support for other NP-C families through existing channels, and share how solving one disease can help solve many others. We are also sure that there is a bigger picture than we can see now.

Niemann-Pick Type C disease is classified as FATAL. With your kind financial donation we can change this to potentially curable and to help fund more grants for research! You can do this through PayPal or by the address below.

You have a couple choices on where you would like to donate.

We ask for your generous financial support and more importantly prayers for the lives of our sons. Together we can make it happen!

Sincerely,

Michael & Jennifer Stults

You have two options:

By Credit Card:

By Mail:

Stults Family
c/o Brisan and Parker Stults
P.O. Box 230
Grain Valley, MO 64029

Niemann-Pick Children’s Fund
P.O. Box 230
Grain Valley, MO 64029

As you see there are times they “look” OK on the outside but then there are other times they our sick. Either way they are always sick with a fatal disease. You can help Brisan and Parker with their current and future expenses that include insurance spend downs for medicaid, COBRA premiums (Mike was laid off in July 09 forcing us to participate in COBRA because of the lack of benefits with new insurance), diapers, wipes, special formula, potential repair cost of our older vehicle, travel expenses to doctors, and anything in general. Currently Brisan and Parker were taking Zavesca (Miglustat) a trial drug not FDA approved for NPC (has been recommended though for approval) but for another lysosomal storage disease that will possibly help buy some time but not cure them.

It costs over $190,000 per year based upon the dosages they were prescribed. We have had to take them off in the mean time because of the concerns of their under lying bleeding disorder. We will be resuming after April 2010 once we are done with the NAC drug trial at the NIH. During this time off we have pretty much eliminated Zavesca as the main under lying issue with their bleeding disorder.

You can also help with our non-profit (Missouri 501(c)3) with raising funds to do awareness/ fundraising events and to help us give towards research. (Read more about NPCF here: http://www.npcfund.org/about-us/ It is important to know that money given to NPCF will not be used for Brisan and Parker. IRS regulations forbid a tax exempt non-profit corporation to be used for a single beneficiary.

Here are screen shots from our insurance’s website showing you what has been happening through September 2009 and how much Zavesca is for each of them monthly. This doesn’t account for 5 months of Zavesca because we’ve had to pause it. We are LUCKY because most insurance companies don’t approve non FDA approved drugs for alternative use a big percentage of the time. This only happens if we pay our full deductible at the beginning of each year (this is has truly been possible from generous people). Medicaid does not cover this drug.