Brisan and Parker Stults | Living with Niemann-Pick Type C

Archive for the ‘News’ Category

This past week has been very good minus one situation (get to that a little later). Brisan is doing wonderful. They came out Wednesday to adjust his chair since he has grown from when he received it last year. They had brought back his cover for the back of his chair but the zipper broke :(. So they have it on rush delivery to get fixed. He also received his “big boy chair” to use in the kitchen. That should be a bit more comfortable sitting at the kitchen table. Overall he has been in a good mood. Such a great mood that last Saturday he pooped all over our bed :). There still are concerns over his right eye and his ability to see out of it.

Parker has been in a great mood as well. He has really enjoyed school and went on his first field trip Tuesday (pumpkin patch). Today he had physical therapy and afterwards did some water therapy. Jennifer said he absolutely loved it!

Duncan is being a cutie and just saying funny 2 year old things. He has shown a lot of interest in baseball or any sport with a ball. Too bad that daylight is shrinking this time of year! He will start school at the end of January.

Now for the news we received last Friday (10-15). Jennifer was at Target getting refills on some of the boys' medications and they said Humana came back illegible. So she called me then I called Humana. The customer service agent stated that “my company” (no, not my company…my old company) canceled the plan. I knew they had recently closed their doors but did not put 2 + 2 together. The shocking part was we were not even informed of the irresponsible decisions of my old company. Looking back now we are thankful they kept open for as long as they did. Knowing what we know now we could have been out of insurance much quicker.

Some of you are wondering why we were on my “old company's” health insurance. I was laid off in July 2009. That prompted us to pay for COBRA.  It's not the best payment in the world but Obama's subsidy made it more affordable. At that time the best option was to keep our current insurance as we were familiar with it, we had met our deductible, and it was a plan that was generous in some areas verses others. Read the rest of this entry »

Well maybe not completely! It has been of course a few weeks since we last updated every one. On 5/24/10 I unexpectedly was informed that my position at work was eliminated. The term “coming out of left field” doesn't even begin to describe the situation. The company had to make some tough decisions due to financial reasons. I am working hard to find employment else where. We hope that it doesn't take long because essentially they only offered me my last check. Talk about not knowing what will happen….We know God will provide but it is scary either way. Along with my traditional resume I created www.Hire.MichaelStults.com. It is something I am using with my marketing game plan to find a job!

For Memorial day weekend we went to Family Camp with Pleasant Valley Baptist Church. We are very thankful we had the pleasure of attending. It was difficult at times because Brisan and Parker unintentionally do get hurt while playing with their peers. With the reduced coordination skills it makes it more difficult for them requiring a ton more supervision. It was nice to get away…get away from life for a few minutes even though we're consistently reminded with the boys the differences they have between their peers.

Brisan, Parker, and Duncan have been OK. As you see from the pictures below Parker has been fondling his butt as if it was his own little worry stone. This is his new thing. The boys started EYS (extended school year) last Thursday. Jennifer also visited Leggit Trails in Blue Springs to see how that school fit the boy's needs or at least Brisan's for now. Jennifer felt after her visit that they have all the accommodations that we would need to properly provided full services for Brisan.

Thank you to everyone that has kept our family in your prayers. We are very thankful and always want everyone to know this. We all have lives and problems that arise in our worlds but for you to take time out of your day to lift our family up in prayer is very special. Please don't forget about the Car Wash Fundraiser for the boys on June 26th. Details Brisan and Parker Car Wash Fundraiser.

A day late and a dollar short… maybe. No approval from the FDA took place this week. In other countries like the European Union, South Korea, Brazil, Russia, Australia and Canada, Zavesca has been approved for use in adult and pediatric patients suffering from this fatal disease called Niemann-Pick Type C.

Our understanding of the news that broke out a few days ago was that they want more testing done from pre-clinical and clinical studies to develop additional information.

Jean-Paul Clozel, M.D. and Chief Executive Officer of Actelion commented: “We remain committed to bringing an approved treatment to patients suffering from NP-C disease and in this spirit we will continue the dialogue with the FDA.”

It appears that Actelion is committed to finding the additional information needed to show the FDA that this could be one of the first FDA approved treatments for Niemann-Pick Type C.  Although this doesn't mean they will be cured, it could give someone like Brisan and Parker a few “extra” days living with NPC. As parents affected by this disease we are thankful that we currently have the opportunity to be apart of it even though Brisan and Parker aren't taking it. They will resume sometime in May this year.

That presents a different challenge for our family because we currently are on COBRA. It will be interesting what 12 months from now will look like especially if it isn't FDA approved because our future insurer might say H-E-double hockey sticks NO!

Here is a link to one of many articles: 

• Actelion receives FDA complete response letter for Zavesca (miglustat) for the treatment of Niemann-Pick type C disease

• FDA Does Not Approve Actelion’s Zavesca in US

• Actelion receives FDA complete response letter for Zavesca