Birth Date - August 20,1997
Main Diagnosis - Mitochondrial Myopathy
THEME: COLORS LIME, NAVY (Interests are horses (especially palominos), violin, soccer (#3),
volleyball (#17) hockey (Buffalo Sabres),
We continue to just be so “in awe” of the quilts. The girls love showing them off to anyone and everyone who comes over. They are so, so special.
Thank you for bringing so much cheer into our family.
For years we watched Laura struggle to eat, grow, and thrive. As an
infant, she constantly threw up following every meal. As she grew older and we
started trying different foods, she began to fall off the growth charts. We
would take her to the doctor, only to be told that some babies “spit up” a lot,
or that perhaps she had a touch of a stomach virus and would soon be better –
not to worry. Our medical story begins when Laura was finally diagnosed at age
six, with a disease called Eosinophilic Gastro-Intestinal Disease (EGID).
Finally – a name to call this unknown evil that had plagued our girl for all
these years, causing her to throw up constantly, have debilitating belly pain,
and not grow as her peers. We had been to countless doctor visits where the
problem remained unknown. Finally, in 2004, after a multitude of tests,
including upper and lower endoscopies, we got some answers.
We found out that Laura had innumerable food and environmental allergies as well
as an Immune- system-level rejection of food in general. When she would eat, her
body would not view the food as nutrition, but rather as an ‘invader’, and would
send out an army of eosinophils (a white blood cell) to attack. They ended up
attacking her digestive system, and leaving her very sick. At this time, we
began to travel 8 hours away to Cincinnati Children’s Hospital so that Laura
could be treated by a doctor more familiar with her condition.
At first, Laura was so sick and in so much pain that she stopped eating all
foods, and was sustained by an amino acid formula, which she drank. She
eventually had a g-tube placed, so that she could receive her nutrition directly
into her stomach. Within the first six months of being on formula and no foods,
Laura grew 5” and gained 20 lbs! She was no longer in severe stomach pain. Since
that time, we have slowly trialed foods, one food at a time for several weeks,
to watch for reactions. In the past 6 years, she has found 16 foods that she can
eat and tolerate without being sick, although the majority of her nutrition
still comes from her daily g-tube feeds. Laura has undergone multiple scopes,
hospitalizations, and procedures to monitor her EGID, as well as from
complications of failed food trials.As Laura grew and we learned to better manage her EGID, it became apparent that she had some other medical problems that we needed to figure out. It seemed as if these were not random things, but that somehow everything was related. She
was not responding typically to the normal treatment regimen for her EGID, and
she was having so much pain that she needed to be on pain meds just to get
through the day. In 2007, when Laura was 9, her doctor suggested to us that
Laura possibly had Mitochondrial Disease (Mito) and that we needed to do some
further testing. We learned that when a disease doesn’t respond to typical
treatment, or when a child has three or more body systems affected,
Mitochondrial Disease might be the underlying explanation.
In May of 2007, Laura and her sister underwent surgery for muscle biopsies on
the same day. They also had a long list of blood work done. Not long after that,
the doctor called us with the results of all that testing. Laura did indeed have
Mitochondrial Disease. She has a deficiency in Complex III and IV of the
Respiratory Chain. She also had a complete deficiency of both CoEnzymeQ10 and
Carnitine in her body. Laura was immediately started on a daily list of pills
and supplements known as the “Mito Cocktail”. Laura and two of her sisters have all been diagnosed with Mito.Mitochondrial Disease is a disease of energy deficiency. The mitochondria are the building blocks of the cells, present in every cell in our body. They are
responsible for converting food and oxygen into energy. When they don’t work
properly, the cells cannot produce enough energy to support major organs or
muscle groups, and those organs and muscles then begin to fail. Mito can affect
any organ, and different people can be affected in different ways. It is a progressive disease that has no cure. As time goes on and Laura grows older, we have worked at learning how to better manage the limited energy that she has. She is learning how to advocate for
herself with the various doctors that she sees. Medically, Laura uses her g-tube
for her daily nutrition, and for overnight dextrose to keep her blood sugar up.
The g-tube has also come in handy when she needs extra hydration, or when she’s
sick. Though several sleep studies, we discovered that she has hypopnea, which
basically means that her lungs breathe too shallow while she’s asleep, so she
now uses a bi-pap machine at night to maintain good oxygen levels while she’s
sleeping. Laura receives IViG every month because her immune system is weakened
by the Mitochondrial Disease. This helps her fight off infections. Even though
she still gets sick frequently, the doctors feel these infections would be much
worse without her immune replacement. Laura’s GI system is the system most affected by her Mitochondrial Disease at this point. In 2008, Laura had her appendix removed due to chronic appendicitis, and in 2010 her gall bladder stopped functioning, so she also had that removed. She has joked that she is not aware of any more “optional” parts that she can
have removed. We try to be vigilant about treating infections immediately,
before they can put a strain on her system. There are times when Laura has to be
admitted to the hospital for IV antibiotics or fluids, to treat an infection or
virus that she just cannot overcome on her own. Even though Laura is easily fatigued and has a lot of muscular and leg pain, she loves to be active and play with her sisters and friends as much as she can. Soccer is one of her passions, and she plays on a girl’s team with her older
sister. It’s not uncommon for her to go to practice and spend the rest of the
day in bed due to the leg pain it causes, but because she loves it so much, we
allow her to make those decisions on what she will spend her energy on.
Laura’s other interests are horses, playing violin, reading, and following
hockey. She is an avid Buffalo Sabres fan, and has enjoyed the opportunity to
meet some of the players through our local Children’s Hospital. She has also
joined a Patient Advisory Council at our Children’s Hospital of Buffalo, which
she enjoys because she wants to help make the hospital experience better for
other kids. Laura is very active in her church and youth group, playing her
violin in the orchestra, singing in the youth choir, and she has a special place
in her heart for all the foreign missionaries. Laura loves the Lord very much,
and never likes to miss any of the activities at church when she is sick.
Laura is homeschooled and just finished the 8th grade. She is very good at
Grammar and Geography. She is very witty and usually has a funny comment about
everything, making us all laugh. She loves Scotland. Her favorite movie is
“Facing the Giants” which is a story about a ragtag football team coming
together to win a championship, reminding us that with God, nothing is
impossible. One day, she hopes to become a doctor and help children who are
going through medical struggles. She has a lot of inner strength and courage,
and is a hero to many, for always facing her hardships with a smile.
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!