> Hello Everyone, my name is Melanie.  My daughter is three years old
> and was recently diagnosed with CP.  If you have time, the following
> is our story - I would like to share my experiences especially if it
> helps educate other families about cord blood and stem cell therapy.
> I apologize for the saga but it would be appreciated if you could give
> me your opinion or advices:

> My husband and I met at ages 15 and 13 in 1985.  We were married in
> 1996.  I started working in downtown NYC in 1998.  On 9/11/01, I was
> blessed to arrive home safely after walking from Fulton St. to Madison
> Square Garden with several co-workers.  That morning like any other I
> commuted through the WTC.  As I walked out of one of the towers the
> first plane hit.  The world would never be the same after that
> experience and we decided to start a family on Thanksgiving in 2001.
> It took us approximately 7 months to get pregnant but unfortunately
> the baby didn't develop and I had to have a D&C at 8 weeks in August
> 2002.  Three months later we were pregnant with Hailey Ane.
> Surprisingly my water broke at approx. 2am at 36 weeks on 9/11/03.
> She was breach and required delivery via C but was truly a blessing as
> we have something wonderful to focus on every 9/11.

> On Hailey's first birthday we decided it was time to try for another.
> Thankfully we were pregnant on the first try.  My husband was hesitant
> to bank our second child's cord blood since we already had Hailey's.
> After research I found that sibblings only had a 50% chance of being a
> match.  This was not acceptable to me and I made arrangements with a
> sales rep via cell phone on my way home from work with my handy dandy
> credit card.

> There were no complications until I went into preterm labor at 32
> weeks.  I was given medication to prevent an early delivery, as there
> were no other signs indicating that the baby was under any stress.
> Zoey Ane was born on 6/14/05 with tremors and stiffness to all four
> limbs.  She was delivered by C-section at 38 weeks.  Zoey was kept in
> the NICU for 14 days.  She had a MRI and catscan, which showed no
> abnormalities.  Zoey's injuries would remain a mystery.  We prayed
> that one day the storing of Zoey's cord blood may help with some of
> her issues.  The cord blood banking process was costly but we
> considered it medical insurance not knowing she may truly benefit from
> treatment one day.

> In Sept., 2005 Zoey had a double hernia operation. On 11/19/05 she
> turned blue at home but thankfully I revived her with CPR.  We rushed
> her to a Pediatric Emergency Room.  It was determined that Zoey was
> suffering from infantile spasms, which were difficult to control, but
> with the help of an experimental steroid, ACTH, she was cured by
> 1/1/06.  We fought with insurance but since the drugs were considered
> experimental we were lucky they covered almost 50%.  Zoey has frequent
> spiking on the left side of her brain so she is prone to seizures and
> needs to take several medications to control the activity.

> Zoey showed no growth for over six weeks and her head was very small.
> In order to maximize her growth potential we had a GI feeding tube
> surgically installed in her belly at 10 months of age.  Zoey is prone
> to breathing difficulties so a machine monitors her nightly and we
> also have a oxygen machine at home.  Zoey has been receiving physical
> therapy from birth and has many doctors that watch over her.
> Unfortunately the overall medical costs are overwhelming, My husband
> was staying home to care for Zoey and her big Sister Hailey Ane but
> had to go back to work to help pay our mounting bills.  Zoey has seen
> an Orthopedist for her underdeveloped hips since birth.  She was in a
> harness for over twelve weeks but the same was discontinued due to the
> location of her GI tube.  Since Zoey's function is unknown we still
> need her joints in proper alignment to avoid future difficulties and
> pain.  We feel that the use of the harness has stunted her development
> but doctors should know best.   Zoey's hips are currently in place but
> her abductors are extremely tight so she may require surgery in
> future.

> Zoey was hospitalized on a regular basis in 2006-07 for seizures and
> reflux as well as dehydration due to Rooda virus and RSV.  Zoey had a
> sleep study to rule out sleep apnea in addition to seizures and
> reflux.  She underwent a spinal for metabolic testing to rule out very
> rare genetic disorders.  Thankfully there were no abnormalities.
> According to Zoey's Neuro-Optomologist, her eyes are fully developed
> but she may require corrective vision at some point.   Zoey does not
> eat solids and requires peptum junior via g-tube feedings.  Since this
> is her complete diet we continue to follow up with the GI doctor and
> nutritionist annually to ensure proper nutrition and growth.

> On Zoey's first birthday I had a miscarriage.  We thought it would be
> a nice to try for a third and hoped another would give our family a
> nice balance.  Thankfully we were pregnant quickly even with the
> stresses from every day.  Prior to Dimitri's arrival at 35 weeks on
> 4/30/07, Zoey was approved for Secondary Medicaid Benefits thru the
> Medically Needy Program in January 2007.  With everything we were
> forced to cut back on Zoey's therapies through Early Intervention due
> to the overall cost share that was instituted by NJ in August 2007.
> EI Services ended at 36 months of age.  Every six months we anxiously
> await approval or possible denial letter from Social Services with
> regards to renewal of the Medically Needy Program and struggle to keep
> up with monthly minimum payments for prior medical expenses.  We are
> thankful Zoey will be starting pre-school which will be funded by our
> school district in September, 2008.  Zoey is eligible for the summer
> program during the month of July.  Hopefully the District finalizes
> transportation on time since my husband and I both work full time.  We
> pay his Aunt to care for our three children while we are at work.  The
> best news is that Zoey will be in a medically fragile classroom due to
> her medical history including pneumonia.  We pray Zoey will remain
> healthy to allow maximum stimulation otherwise the school district
> will consider home therapy.  Zoey will be without Physical,
> Occupational and Speech therapies during the months of August since
> school is closed.  It is best for us not to take Zoey to outpatient
> therapy due to her poor immune system so we hope to obtain home
> therapy to avoid set backs in Zoey's progress.

> Zoey was officially diagnosed with cerebral palsy quadriplegia and
> seizure disorder at 34 months of age.  She cannot sit up on her own,
> crawl or walk.  She enjoys watching and listening to her 4 1/2 year
> old sister, Hailey Ane and 14 month old brother, Dimitri, Jr.  Zoey
> has a beautiful smile, she vocalizes by giggling and loves to say
> "awh" and "ello".  She is able to play with adaptive toys.  She is
> only able to sit up in her medical chair otherwise we need to prop her
> up with pillows and wedges due to her poor trunk and head control.

> I've been pushing the neurologists to research stem cell therapy using
> Zoey's own cord blood since she was diagnosed with infantile spasms.
> I continued to follow up with no luck.  The doctors didn't know much
> about the process so I continued to send them updates received from
> CBR on experimental testing and Dallas Hextell.  This past month I
> emailed the Dr. daily and finally had the emotional strength to
> contact Duke University on my own and at the same time Zoey's Dr.
> found time to contact Dr. Kurtzberg as well.  Due to our efforts, Zoey
> is tentatively scheduled to receive her stem cell infusion on
> 7/29/08.  There is a chance this may help repair damaged brain
> tissue.  The treatment alone will cost approximately $12,000 and
> unlikely covered by insurance since the procedure is experimental.  It
> will not harm Zoey since they are from her own cord blood which we
> banked at birth.  Any improvements would be permanent.

> Zoey had blood work drawn, they will run an ID check to confirm the
> cord blood is hers.  Then they test a sample of the cord blood.  Then
> we will go to Duke University for developmental evaluation.  Next the
> cord blood is infused by IV in the clinic as an outpatient.  There are
> MRIs to be done to follow the results along with clinical exams one
> year after the infusion.  Our insurance will not cover developmental
> testing.  The doctors are not sure if it will work for CP motor issues
> but there is early animal experimental data to suggest there is a
> chance it will.  There is not expectation it will help with seizures.
> Thankfully, she has just enough cord blood for the infusion but none
> for later.  Regardless, we must afford Zoey this opportunity for
> improvement.

> Following is web address to see a little boy, Dallas, 6 months after
> his infusion http://www.msnbc.msn.com/id/23572206/%3E

> Although the severity of Zoey'sCerebral Palsy differs from Dallas this
> still gives us hope.  If you know anyone who is expecting, please
> share this inspiring story with them so that they may benefit from
> saving their baby's cord blood with CBR. Zoey is our miracle, she
> truly deserves a miracle of her

Zoey needs your help! Little Zoey Ane Komninos is the granddaughter
and great niece of Jim Ollick and Deacon Greg Ollick, respectively.
Zoey has a very rare disease. There is a very promising but very
expensive procedure described in the letters attached. Please read the
letters from Deacon Greg Ollick as well as the descriptive letter
about this disease, written by Jim Ollick below. How can you help?
Give. Think about why we are Christians? What is our Lords message?
Help all those in need. Simple but direct. Zoey needs your
contributions. If you can only afford one dollar send it. If you can
afford five, ten, twenty, fifty, one hundred, one thousand!!! Send it.
It will make you feel great, believe me. If you know someone who can
help, weather or not you can, please forward this to them.

How and where?

Make checks payable to Knights of Columbus Council 7923
Mark on the envelope or check memo "Zoey Fund"

Mail to:
Knight Jim Carroll
526 Hunt Station Drive
Lawrenceville, GA 30044.

Yours in Christ,
Jim & Marian Ollick

A summary of Zoey’s condition and a plea for your help from Zoey’s
Great Uncle and her Grandfather:

From her Great Uncle Greg,
I’m writing to bring to your attention a case involving my niece’s
daughter, Zoey.   We just celebrated Zoey’s third birthday.  Zoey was
born with a condition that has left her unable to function.  She has
no control of her skeletal motor system what so ever.   Since birth
she has not been able to move or speak.  She has to be cared for day
and night and she requires tube feeding.  You can read about the
details of her condition in my brother Jim’s letter, which is below.

Her parents, Mel and Jim, have dedicated their lives to Zoey and their
other two developmentally normal children.  They have been caring for
Zoey with a love and devotion that we all can admire and should
emulate.

There is a new experiential procedure using umbilical cord stem cells
that has been used successfully on other children with similar
conditions at Duke University Medical Center.  The doctors there feel
that Zoey is a candidate for this procedure.  Of course, there is a
cost involved and because of its experimental nature the insurance
company will not cover it.

The cost of this procedure will be around $12,000 plus ongoing follow-
up visits.  We are asking you to consider helping us in our effort to
raise the funds.  As you can imagine, her parents are in financial
distress resulting from the past three years of medical bills.

It is for the very highest good of our souls when we move outside our
comfort zones and reach out to help the families of our fellow
Christians in need and I believe that this is a perfect example of
that call to charity.

May God bless you, and my God bless Zoey.

Sincerely,
Deacon Greg Ollick

From her Grandfather Jim,
My granddaughter Zoey has cerebral palsy quadriplegia. She is a
candidate for stem cell therapy, which is permissible by the Catholic
Church since the stem cells are hers. The cells were saved with the
cord blood when she was born.

Zoey was born on 6/14/05 with tremors and stiffness to all four
limbs.  She was delivered by C-section at 38 weeks. Zoey was kept in
the NICU for 14 days. She had a MRI and Catscan, which showed no
abnormalities.  Zoey's injuries remain a mystery. My daughter stored
Zoey’s cord blood with the hope that one day it may help with some of
her issues. The cord blood banking process was costly but we
considered it insurance not knowing whether or not she may truly
benefit from treatment one day. It appears that that day may be close.

On 9/29/05 Zoey had a double hernia operation. On 11/19/05 she turned
blue at home but thankfully Melanie revived her with CPR.  We rushed
her to the Pediatric Emergency Room at Hackensack Hospital. It was
determined that Zoey was suffering from infantile spasms, which were
difficult to control, but with the help of an experimental steroid,
ACTH, they stopped by 1/1/06. Zoey has frequent spiking on the left
side of her brain so she is prone to seizures and needs to take
several medications to control the activity.

Zoey showed no growth for over six weeks and her head was very small.
In order to maximize her growth potential we had a GI feeding tube
surgical installed in her belly at 10 months of age. Zoey is still
being tube fed. Zoey is prone to breathing difficulties so a machine
monitors her nightly and she also has oxygen at home. Zoey has been
receiving physical therapy from birth and has many doctors that watch
over her. Zoey continues to see an Orthopedist for her underdeveloped
hips. Zoey's hips are currently in place but her hip abductors are
extremely tight so she may require surgery in the future.

Zoey was hospitalized on a regular basis in 2006 for seizures, reflux
and dehydration due to Rotovirus and RSV. According to Zoey's Neuro-
Optomologist, her eyes are fully developed but she may require
corrective vision at some point. Zoey does not eat solids and requires
Peptum Junior, which is considered a complete diet.

Zoey was officially diagnosed with cerebral palsy quadriplegia and
seizure disorder at 34 months of age.  She cannot sit up on her own,
crawl or walk.  Zoey has a beautiful smile, she vocalizes by giggling
and loves to say "awh" and "ello". She is only able to sit up in her
medical chair otherwise we need to prop her up with pillows and wedges
due to her poor trunk and head control.

Zoey is tentatively scheduled to receive her stem cell infusion on
7/29/08.  There is a chance this may help repair damaged brain tissue.
The treatment alone will cost approximately $12,000 and not likely be
covered by insurance since the procedure is experimental.  There will
also be follow-up visits, not to mention all of the hospital bills
that have mounted since her birth. This procedure will not harm her
since they are from her own cord blood. There are MRIs to be done to
follow the results along with clinical exams one year after the
infusion. Melanie’s insurance will not cover developmental testing.
Thankfully, she has just enough cord blood for the infusion but none
for later. Regardless, we must afford Zoey this opportunity for
improvement.  Any improvements would be permanent.

Following is a link to see a little boy, Dallas, 6 months after his
infusion ">http://www.msnbc.msn.com/id/23572206/%3E

Although the severity of Zoey's Cerebral Palsy differs from Dallas,
this still gives us hope. Zoey is our miracle and she truly deserves
one of her own along with your prayers for her continued progress.

We will be forever grateful for your consideration regarding
contributions to help cover some of these costs, as the family cannot
afford them

Thank you and God bless,
James Ollick & Family