I wanted to let everyone know Nickolaus is home and doing well. Thank you all for your prayers!

 

Love the Frisch's

Slide, Inc.
301 Brannan Street
6th Floor
San Francisco, California 94107

Slide, Inc.
301 Brannan Street
6th Floor
San Francisco, California 94107

---

From: Peroxisomal_Disorders@yahoogroups.com [mailto:Peroxisomal_Disorders@yahoogroups.com] On Behalf Of shawnee bear
Sent: Tuesday, September 29, 2009 3:21 PM
To: Peroxisomal_Disorders@yahoogroups.com
Subject: Fw: [Peroxisomal_Disorders] Re: Nickolaus

 

Thank you everyone. Nickolaus is doing better. They got him on medication for the swine flu just in case. He has finally broken his fever and starting to act more like himself. The pediatrician said if all goes well we should be home by tomorrow. if not we will be here the rest of the week.

I just finally got my little boy to sleep and what do they do. vitals time....ughhhh. how can anyone ever get better with the constant moving and all the other crap.

 

will keep everyone posted as time goes by!

 

Love,

 

The Frisch's

Our prayers are for you all right now...

--- In Peroxisomal_Disorders@yahoogroups.com, shawnee bear <shawneebear1@...>
wrote:
>
> Hello everyone!
>
> Wanted to let you all know we are in the hospital with nickolaus. last night
he started coughing and then he had a spiked fever. said it was croup. they
ended up breaking the fever. but now he has something different. we requested a
transfer to another hospital. well almost 24 hours later we still dont know what
is going on. nickolaus seems to be getting back to his normal self, except for
the cough, we will keep everyone posted on how the little man is doing.  (seems
like 6 months good and then a week or two bad.)
> why does this happen to our little innocent children. it is so painful to see
them go through this and there is nothing we can do to help them.
>
> Shawnee Frisch
>

Hi Shawnee...  Know how you feel when you end up in the hospital "again".  They
are so little, innocent, loved.  Pain.  I hope you have a prayer support network
to uphold your family.  I found prayer support friends who came into the
hospital room, got a bowl of soup for me, etc... most helpful/encouraging.

I think the mice lab donation to ULF is a good idea.

Love to Nickolaus and you,
Kathryn and Huy (and Allison)

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Hi Everyone,

Pardon my ignorance but I am a little confused about where you would like us to
make a donation. Do you want me to send it directly to the ULF using the
Zellweger Grant Fund attachment or do you want me to contribute at www.zbsn.org?

Thanks,
Jennifer


--- In Peroxisomal_Disorders@yahoogroups.com, Pam Freeth <pamfreeth@...> wrote:
>
>
> We have posted about this research in the last few days.  We are looking for
comments from anyone and haven't had any response. ZBSN is prepared to donate to
this research but we will not be able to donate the full $9500 they need. We
want to know that if we donate funds that this project will be able to move
forward.  I'm sure we could get them a good start on this program but if they
have to have the $9500 to begin then we need more donations sent to them.  Any
comments or feedback in regards to this is greatly appreciated.
>
>
> God Bless You Everyday!
> Pam Freeth
> Wife to Dan, Mother to Matt, Jordan and Angel Olivia (7/29/04 died
12/20/04Zellweger Syndrome)
> Please come visit our mission:  at www.zbsn.org
> http://www.serendipityinbonair.com/  Art Consignment in Old Bon Air
>
> Pam Freeth
> Development Assistant
> Halcon Companies
> 2026-c Timbers Hill Drive
> Richmond VA 23235
> (804) 272-2009 Office
> (804) 308-1913 Fax
> (919) 741-9778 Cell
> pfreeth@...
>
>
>
>
>
>
>
> To: Peroxisomal_Disorders@yahoogroups.com
> From: sbutalla@...
> Date: Fri, 25 Sep 2009 12:54:23 -0500
> Subject: [Peroxisomal_Disorders] ULF News [2 Attachments]
>
>
>
>
> [Attachment(s) from Shannon Butalla included below]
>
>
>
>
> For everyone's information… some research updates from the ULF.  This is the
particular study that is requesting funding from the ULF.  Thus far, $500 has
been received, and $9500 is needed to continue this particular research project.
If you want to donate to this cause, or know others who may be interested in
doing so, please feel free to reproduce the attached documents for your personal
use.  From the scientist who submitted to the ULF:
>
> These mice provide a very unique and important research tool; in particular,
the PEX2-/- line is the only Zellweger syndrome mouse model where there is any
significant postnatal survival. This great benefit has enabled us to test
potential treatments (e.g. with bile acid compounds) and also led to the novel
discovery that there are major defects in the functioning of the endoplasmic
reticulum in the peroxisome deficient liver. This has opened up new avenues for
treatment directed at alleviating this problem, studies we are hoping to
initiate soon.  Some other results obtained by feeding PEX2-/- mice with
different bile acid compounds than previously tested, which has resulted in a
striking increase in postnatal survival of the PEX2-/- mutants (near 90%) in the
early postnatal period. We are very excited by these promising results and hope
there may be some future translation to helping PBD patients. We have strong
data for an upcoming grant proposal to the NIH but funding levels have still not
recovered; often repeated submissions are required to obtain NIH funding and it
simply takes time to work through this process.
>

from Anna Bran...

Hi Elizabeth
Yes, we are now planning a "Family Session" (led by Nancy Braverman) as part of
the Peroxisome conference in Seattle and I would love it if you and/or your son
& Hayden & family could attend.  I will be sending an  email shortly to all the
"families" who have contacted me with interest in attending the conference – so
stay tuned…..and feel free to share the word and/or send me emails and I'll add
them to my distribution list.

Anna Bran [abran@...]

Hello Everyone! I have talked with Paula today. She just got back from vacation.
We are looking to do a donation to ULF. I asked Paula about where the money will
be applied. I was advised the entire amount will be will be going towards
keeping a Zellweger mice colony going as research is progressing in the disease,
this is critical that the mice are not lost.

Please advise your thoughts and opinions on this.

Thank you!

Shawnee Frisch
Secretary of ZBSN




--- In Peroxisomal_Disorders@yahoogroups.com, "Shannon Butalla" <sbutalla@...>
wrote:
>
> I got a call from Paula from the United Leukodystrophy Foundation.
>
>
>
> As many of you know, the ULF generously supported the first ever conference
> for families of children with PBDs.  Today, they received an urgent request
> from what she feels is a good cause, and it happens to impact our children
> and future generations of children with Zellweger Spectrum Disorders, or
> PBDs.
>
>
>
> Although Paula is not able to disclose the name of the research scientist
> that requested funds, she gave me enough information that I could piece
> things together and know who is asking for what.
>
>
>
> Apparently, the way that some institutions work with their grant funding,
> scientists are limited to how they can use the money that has been received
> through donations or grants.  This particular scientist is in jeopardy of
> keeping her research going because she doesn't have the funding to keep her
> mice alive.  Right now, trials are in place to find the pharmacological
> agents (medicines) necessary to increase Peroxisome function.  Without her
> mice, the researchers will have no choice but to discontinue this study.
>
>
>
> The ULF is a nonprofit, 501 (c)3 foundation that supports research for all
> white matter diseases.  Like many organizations, their fundraising has been
> affected by the current state of the economy.
>
>
>
> A grant request of $10,000 was made by the scientist studying these
> diseases, and the ULF wants to honor this request, further crediting their
> scope and mission of their organization.
>
>
>
> As a courtesy to the ULF and their commitment to the scientists, doctors,
> and families passionate about finding interventions to help children with
> Peroxisomal Biogenesis Disorders, I urge you to consider donating or finding
> donors for this grant request.
>
>
>
> Attached please find a flyer and donation form.  This may be used to send in
> your donation and/or reprint and distribute to others who might be
> interested in supporting research toward these devastating disorders.
>
>
>
> If you have any questions, please contact me at sbutalla@... or
> 402-327-8129.
>
>
>
> Shannon Butalla
>
> Mom of Sam Butalla 7.1.2002
>
> Lincoln, Nebraska USA
>

I have an additional question about pre-school.  In NYC there are many school
options.  However, all the special needs/ed programs are full day:  8:30 - 2:30.
One incorporates feeding therapy, but its the worst option since there is not
even a playground.  Do your three year olds attend school all day?  Can I push
for svs at home? -Denise




--- In Peroxisomal_Disorders@yahoogroups.com, shawnee bear <shawneebear1@...>
wrote:
>
> Hello Everyone. I need your thoughts and opinions. Nickolaus early
intervention mentioned about sending Nickolaus to the Center for Disablity when
he turns 3. They also advised us we can have him home schooled. Please help. How
are the other children doing in schools? are they more likely to catch something
from others or do you think he should be going to the center when he turns 3? we
are at a loss.
>
> Any thoughts and opinions are greatly appreciated!
>
> Shawnee (mother of Nickolaus)
>

-Hi Shannon,
   He's only been really sick twice in his life.  Both times we went to ER.  He
just kept throwing up, refused bottle.  I think hes not been sick because he's
home, and generally has good immunity.  He doesnt even get fever with shots. 
The low tone thing in his case applies to the annoying colds/coughs.  Take
FOREVER to get well.  Appreciate your feedback re: port tho.


-- In Peroxisomal_Disorders@yahoogroups.com, "Shannon Butalla" <sbutalla@...>
wrote:
>
> Denise,
>
>
>
> How often is Danny getting fluids?
>
>
>
> The only reason I ask, is that we are now able to administer fluids to Sam
> via his port.  We can go hang out in infusion services and receive hydration
> if needed, or if he is sick and needs fluids, they just hook him up and send
> us home with a little backpack full of fluids.  Sam went on drinking strikes
> amidst his heavy phases of chemo, and it was a lifesaver being able to get
> fluids into him without a struggle or pain.  Even now, if there is a time
> where I think he's a bit under the weather and hasn't had a good enough
> drinking day, I just phone his Oncologist and she puts an order in for a
> couple hours of fluids.  It is amazing how he turns around with adequate
> hydration.
>
>
>
> I know Danny is likely not at a point where anyone would want to place a
> port, but thought I'd share our experience in the event you are making
> monthly/frequent visits to the ER.
>
>
>
> Shannon
>