Dearest family, friends and well-wishers,
First let us extend
our thanks to everyone for all of the love and support that has been
shown to our family during this difficult time. Now more than ever we
will need you all.
It all began a few weeks ago when beautiful 9
year old Ciara began to complain of headaches. The normal type of
headaches that were relieved with over the counter children’s Motrin.
Then on Christmas day she had what appeared to be a lazy eye. Ciara knew
something was wrong with her eye but was unable to fix it. The very
next day the lazy eye got worse and now her vision was effected. Ciara
was also now complaining of a bad headache. Ciara was then taken to the
Emergency Room at Wentworth Douglass Hospital in Dover. WDH performed a
cat scan and told the Family that it was perhaps "nerves" and they
scheduled a follow up appointment with Ciara's Primary Care Physician in
Portsmouth at 4pm the following day. On the next day they received a
phone call at 1pm, hours before the scheduled appointment, the PCP's
office called and said that the Doctor had a chance to look at the scan
and he "found something". He instructed mom Stacie and Ciara's Dad,
Harold, to immediately bring their little girl up to Dartmouth-Hitchcock
in Lebanon, NH.
At Dartmouth-Hitchcock they performed multiple
MRIs and Ciara was terminally diagnosed with a malignant brain tumor
called a DIPG. DIPG - Diffuse intrinsic pontine glioma (DIPG) is a
brain tumor found in a part of the brain stem called the pons. The pons
controls essential bodily functions such as heartbeat, breathing,
swallowing, eye movement, eyesight, and balance.
children almost exclusively. Approximately 200-400 children in the
United States are diagnosed with DIPG each year. These children are
typically between the ages of 4 and 11. DIPG accounts for roughly 10-15%
of all brain tumors in children.
DIPG is an aggressive tumor
that interferes with all bodily functions, depriving a child of the
ability to move, to communicate, and even to eat and drink.
DIPG tumor begins to grow, it puts pressure on the nerves that control
the essential bodily functions regulated by the pons. Children with DIPG
commonly experience double vision, reduced eye movement, facial
weakness or asymmetry, and arm and leg weakness. They also have problems
with walking, coordination, speech, chewing, and swallowing. As the
tumor progresses, it also interferes with breathing and heartbeat, which
ultimately results in the child’s death.
On Friday 12/30/16 one
of Ciara's Doctor's believed that he could reach enough of the tumor to
perform a hot biopsy that may allow them to provide some sort of
treatment to prolong Ciara's life, but Mom & Dad were told to
prepare for the worst. The results of the biopsy are expected to come
back in 10-12 days.
On 12/31 Ciara was allowed to go back to her
home in Portsmouth where she was met by her brother, her sister, her
parents, her many cousins, Aunts & Uncles and Grandparents too, and
together they celebrated New Year's Eve. The guest of honor, Ciara was
smiling for the first time in days and was talking and making jokes with
her big crazy family. She was in great spirits and if it weren’t for
the bandages wrapped around her head, you wouldn’t be able to tell that
all is not well with our ray of sunshine looking at her beautiful
The purpose of this fund in no particular order is:
- Create as much joy as possible for Ciara for as long as time allows
- Help parents offset the cost of missed work(Harold will be shutting
down his business for the time being to be with Ciara) while spending as
much time with their little girl as they can
- Medical bill