|
|
|
My great nephew, Jonah Alexander Williams, was born
February 27, 2009
with Junctional
Epidermolysis Bullosa (an extremely rare form of a life
threatening, genetic skin disorder) and is now home following a month in the
Neonatal Intensive Care Unit at
Wake
Forest
University
Baptist
Medical
Center
Brenner Children's Hospital. Jonah is faced with a
life of pain, medications, and expensive procedures. There is no known
cure, solution or preventative measures for his condition beyond ongoing
research or a miracle. Ongoing research requires time and although
literally thousands are praying for a miracle for Jonah, miracles aren’t
in our hands. In the words of Jonah’s grandfather, “looks like we need
to prepare for a marathon not a sprint.” |
| If you have arrived here unaware of this issue,
please visit Jonah's two Facebook Groups Prayer Group
/ Support
Group, Jonah's
Support Group Blog or Jonah’s
Mother’s blog. Read the first article on the
front page of the Winston-Salem
Journal. One aritice not enough? Try out the second.
For detailed
information about EB, visit EBNurse.org.
See a video
by Dr. Alfred Lane about EB research and treatment. Read Jonah's Great
Aunt Kat's blog posting Letter
to Jonah. |
|
|
|
Receive e-mails about Jonah!
Please
join those who have added their e-mail address to Jonah's mailing list. Receive update information,
support suggestions and later Jonah's newsletter. Follow all of the
instructions and receive a surprise! Do you know Jonah's dogs name? |
| Why
are you here? |
|
|
Most likely you have linked here from another
site because you have an interest in helping Jonah and his parents. The
purpose of this page located on my long-standing respected business site
is to provide information for many asking the question “how can I help?”
Jonah’s parents and grandparents are extremely uncomfortable responding
to such a question as I am sure you can understand. Uncle Chris is not as
bashful speaking on their behalf, so please allow me to make it very
clear--this is me talking, not them. |
| Why am I doing this? |
| Far beyond my personal connection to Jonah, please
understand that this is a hereditary genetic disorder which may now or in
the future affect my children, grandchildren, current members or future
generations of my family. Let me put this bluntly in good old boy southern
red neck language, “I have a dog in this fight.” Please feel free to
check out this site and me to find a comfort level that this page is the
real thing from a concerned member of Jonah’s family. You will find a
return link to Jonah's page at the bottom of every page on this site so
you cannot get lost. This is a very large nine-year-old site. |
|
| What is all of this going
to cost and who will pay? |
|
|
We don't have a clue of the cost. The cost of
supplies alone we understand could exceed $4,000 per month much of
which may not be covered by insurance. There is insurance, but
without doubt it will not cover all of Jonah's or his parents' expenses and
they certainly will not have the means to deal with the long-term financial
burden. Both parents work, but meeting Jonah's needs will be a full time
task requiring at times much more than four loving hands. Changing his dressings
alone once a day will require three hours and for newborns usually involves
three people. |
| How can you help? |
|
Click on of Jonah's
Magnet to purchase one or make a donation
Jonah's 5 inch magnet |
| The Williams family attend the Pinedale
Christian Church in
Winston-Salem
,
NC
. Pinedale Children’s Ministry has set up a Baby
Announcement page for Jonah. From this page you can send the
family a congratulatory e-mail. Please visit this page and show Matt
Patrice and Jonah your love.
Thousands (7768 as of 5/15/09) are already joined together on the Facebook
Prayer Group lifting up prayers and providing loving
support for Jonah and his family. There can never be enough prayer warriors.
Join Jonah's Facebook
Support Group, providing information and reaching out to meet
Jonah's needs. This support group is about rising to our feet girding
on armor, selecting our weapons of choice and taking on the cause of
physical support. This group is just getting off of the ground and has 648
members as of 5/15/09. The support groups e-mail address is:
jonahs.support.group@gmail.com
Just started, join the 139 members (as of 5/15/09) who have added their name and e-mail address to Jonah's e-mail list on the upper
portion of this page.
Thousands visit (over 300,000 hits in the first three weeks) Jonah's
mother's blog daily to check on his condition and
hundreds leave messages of support, information and advice including
mothers of children with EB, people who have EB, along with medical
professionals. Can't have too much of that.
Many are sending e-mails to Jonah for his baby book. These will be a
precious keepsake for Jonah, Matt, and Patrice as Jonah gets older.
Jonah's e-mail address is: jonahawilliams@gmail.com.
Please shower Jonah and his parents with emails. Let them feel your love
and prayers.
Many have inquired how they can do more and specifically to whom do we make out a check and where do we send it? This page is about
answering those questions without the family feeling as if they are
begging for money. They aren't. This is simply about providing information
for caring people who desire to be involved whether such is requested or
not.
|
|
| The options
currently or hopefully soon to be available. |
|
|
Jonah's mothers favorite photo with his lip stuck out. This
tiny boy is a fighter, as are his family, but they can't fight this battle
alone. Jonah needs YOU. It will indeed take a village to raise this child.
Please join us in our commitment surrounding Jonah and his family with
love and our support. Below you will find ideas of what you can do. This
list will be revised as additional information and resources become
available. Many ideas are being discussed and/or are in planning stages.
If you have a suggestion or a commitment please e-mail it to:
jonahs.support.group@gmail.com |
Help sell
Jonah's Magnets:
- Send people to Patrice's
blog posting about magnets.
- Hand out or post flier about Jonah's
magnet (click
to get flier).
- Purchase
magnets and re-sale.
- For those who don't have a clue send them to the site we have set up
to sell magnets by sending them a link (click
to see site and get link).
|
Click to Purchase a magnet!
|
| Additional
Options |
- Option number one I learned at Jonah's great, great grandfathers
knee. Someone is in need. Pull out wallet and look for bill large
enough to help, but not so large it does damage to the needs of your
own family. Fold bill, place in palm of right hand, tip hat in greeting,
shake hands with person in need closing their hand around the bill,
smile, tip hat and walk away. I have no idea how many times I observed
Jack Hilton or my father (without the hat tipping) do just that. Even
tried it myself a few times but usually invoke more modern methods.
- Option number two for those who aren't close enough to tip their hat
there is snail mail--we are fast forgetting how to use this. You can simply
make the check payable to Matthew and Patrice Williams or if
you care to be more specific per my accountant Matthew Williams
Parents/Guardian of Minor Jonah A. Williams.
Mail check to:
Jonah Alexander Williams
% Matt Williams
PO Box 11455
Winston-Salem, NC 27116
- Option number three, if you would like to make use of your credit or
debit card for a donation to Jonah's Support Group for his care click
here:
- Option number four for those who seek credit for a charitable contribution. Jonah's
church has established an account to assist with his care. Make
your check payable to Pinedale Christian
Church add a note for Jonah Williams
Mail check to:
Jonah A. Williams
% Pinedale Christian Church
3395 Peters Creek Parkway
Winston-Salem, NC 27127
- Option number five many people are asking what do they need and
where do I send it. At your request Jonah's mother Patrice has posted
a list of needs on her blog (Go to the Williams
Family Blog) If you become
aware of other needs from Patrice's blog postings and it's something that will fit
in a post office box, send it to the PO Box listed for Matt in option
number one. If it is something that will not fit in a PO Box or you
need to ship to a street address, ship it to me at:
Chris D. Hilton
310 West Fourth Street, Apt. 1806
Winston-Salem, NC 27101
- Option number six for those who enjoy good quality Christian music
or enjoy a good walk for a cause.
Rumor has it a benefit concert is in the works. There is talk of a
possible walkathon and/or marathon. Watch here and on the Facebook Prayer
Group and Support
Group pages for details.
- Option number seven for those interested in being less case specific
but have interest in assisting in research finding solutions for EB,
check out the following sites:
|
|
|
|
EBMRF
-
Epidermolysis Bullosa
Medical Research Foundation
|
| If you are under the incorrect assumption that I
officially represent the Williams/Hilton family you would be incorrect.
Therefore, I will not presume to thank you on their behalf. I will leave
that to all of them. I will and can however express my personal and sincere gratitude
for your kind consideration of how you can participate and help my family
members.
Thank You, Chris D. Hilton
|
|
| Get out
your tissue box and read "Letter to Jonah" at my sister-in-law
Kat's Blog Grass
Stains |
|
Don't forget to sign up
for Jonah's e-mail list near the top of this page! |
|
|
