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Nathan’s Story
Meet Nathan Salacup, age 11. Growing
up, Nathan wasn’t as active as most
babies his age. He started walking at
age 2, wouldn’t play at the park, and
always wanted to be held. Nathan’s
parents took him to numerous doctor
appointments and at age 5 he was
referred to a pediatric neurologist. Nate was misdiagnosed
numerous times and they later found out he has a Mitochondrial
Disease. At least with a diagnosis, they can help give him the best
shot at fighting this unpredictable and misunderstood disease.
The Whaleys’ Story: Kailyn & Charis
On May 10, 2012 our 3-year-old daughter, Kailyn, was
diagnosed with Mitochondrial disease, a disease that could
eventually lead to her early death. On August 30, 2012 we
learned our other daughter, Charis (1), carries the same illness.
This is our story.
Shortly after my husband and I married, we were blessed with
the news that I was pregnant. After an easy pregnancy, I gave
birth to a beautiful, seemingly healthy, baby girl — Kailyn.
But when Kailyn was one year old, my husband and I became
concerned: she could not walk unassisted, her talking consisted
of single syllable sounds, she had acid reflux and asthma, and
her reflexes were very slow.
Nathan is now 11 years old. He brings so much joy to everyone
he meets. His smile is contagious and he would do anything to
make you laugh. His body struggles every day to get the energy
he needs to do simple things that all boys his age do; walk, run,
throw a football, play with friends, and even finish homework.
Fortunately, Nate has responded well to the “Mito Cocktail” of
recommended supplements. He is a fighter and works very hard
to stay mobile, eat healthy, and engages in light exercise. With
those things combined, he can reach his best potential and limit
interventions. On the other hand, when Nate pushes himself too
far, he suffers from lactic acidosis, which gives him headaches
and causes him to vomit. Nathan uses a power scooter to
conserve his energy. He should be able to have the energy enjoy
his childhood. His family and friends hate to see him suffer so
they pray and fight for a cure to be found. Please join his family
to help this loving boy!
Well-meaning friends and family assured us that she was fine,
help. Doctors conducted a long series of tests to figure out what
Proceeds will benefit the Mitochondrial and Metabolic Disease
Center at UC San Diego Health.
was wrong. It took us two and a half years to get a diagnosis for
Make checks payable to: UCSD Foundation Fund #3970
Kailyn: two and a half years of MRIs and x-rays, two and a half
Retinitis Pigmentosa), a mitochondrial disease that has a wide
For questions and to send donations, please contact:
Nikisha Belt
UC San Diego Health Sciences Advancement
9500 Gilman Drive # 0937
La Jolla, CA 92093-0937
858-246-1230 | [email protected]
spectrum of symptoms and is known as a “silent killer.”
mitoresearchfund.org | 619-823-9394
and we waited until Kailyn was 18 months old to seek medical
years of invasive tests and countless specialists. When all these
assessments finally ended, my husband and I were devastated
to learn our daughter has NARP (Neuropathy, Ataxia, and
cont’d on inside spread
Come celebrate our 5 year anniversary
of raising funds for children devastated
by mitochondrial disease.
Saturday, May 20, 2017
Run starts at 9am • Walk 9:15am
NTC Park, Liberty Station • Point Loma
Post-5K activities include:
• Carnival games and prizes
• Beer garden and food trucks
• Live music performances
•Raffles, vendors and more
Early registration (through March 31)
Ages 5–12: $25 ($21.50 tax deductible)
Ages 13+: $30 ($26.50 tax deductible)
Registration (after April 1)
Ages 5–12: $30 ($26.50 tax deductible)
Ages 13+: $35 ($31.50 tax deductible)
All registrations include an event reusable bag.
To register, please visit mitoresearchfund.org.
What Is Mitochondrial Disease?
Mitochondrial disease results from failures of the mitochondria,
the organelles responsible for more than 90 percent of all energy
needed to sustain life and support growth. When these fail, the
cell produces less energy resulting in cell injury and death. When
this process occurs throughout the body, whole systems fail,
compromising the body’s ability to sustain life.
UC San Diego Doctors at Work
Of all the critical research taking place in medicine, mitochondrial
medicine is the fastest growing area. Mitochondrial disease is
widely recognized as one of the most important new areas of
study in medicine — not only because it affects children with
genetic disease, but because it can be implicated in virtually all
chronic illnesses associated with aging, and many autoimmune
diseases. By looking for better treatments of mitochondrial
disease in children, we can better treat common adult diseases
as well.
In a recent paper by UC San Diego Physician-Scientist Dr. Robert
Naviaux, he explains why children with mitochondrial disease
have numerous complications with infections, how to prevent
these complications with new kinds of early intervention, and
how mitochondrial dysfunction lies at the heart of many of the
most prevalent chronic diseases known to medicine — including
diabetes, cancer, Alzheimer’s and Parkinson’s diseases.
We walked out of the office in shock. In a matter of seconds,
Symptoms vary between individuals but can include:
to mend. Like all moms, I had hopes for my children. I hoped,
our hearts were ripped out — something we yearn for a way
• Loss of motor control
• Muscle weakness and pain
expected really, that my children would be healthy, make
• Difficulty swallowing
• Gastrointestinal disorders
friends, go to college and have families of their own. But in the
• Stunted growth
• Heart and liver disease
face of MD, these hopes are dreams — the reality is that my
• Diabetes
• Respiratory complications
children will be exceedingly lucky to live past high school.
• Seizures
• Visual / Hearing impairments
• Developmental delays
• Susceptibility to infection
Mito Facts
•Children with mitochondrial disease (MD) have a 50 percent
chance of living past age 10; only 20 percent live to age 20.
•Every 30 minutes a child is born who will develop MD by
age 10.
•Mitochondrial dysfunction has been linked to many other
diseases including Autism, Parkinson’s disease, diabetes,
Alzheimers, cancer, obesity and infertility.
•Over 50 million Americans suffer from these diseases and
disorders. If a cure is found for MD, all of these diseases /
disorders will benefit.
Many days we don’t feel very lucky. The doctors’ appointments,
the exhaustion and the fear can wear on us. But we are lucky.
We get to hear our daughters say “I wuh yuh,” watch them
laugh when we make silly faces and see them light up when
we enter the room. Many other “mito” kids can’t watch their
favorite cartoons, swallow their food, or even roll over.
Yet life goes on. And each day our daughters get the best of
us. We do fun stuff with them. We laugh and giggle with them.
We strive to make every precious moment with them count —
because we don’t know when the last one will be.
When we see our beautiful angels smile, laugh and play it
moves us out of our sadness. We cherish our girls every day
— they are our heroes. They push us through our struggles
and drive us to be the best parents we can. In that spirit, I
refuse to be just a parent. I am a parent, and I am a researcher.
I am a parent, and I am an activist. I am a parent, and I am
an advocate. For my girls, and for the other parents out there
facing the same struggles my husband and I face, I must do all
these things and I must do them well. If I can do that, then one
day there will be an end to this disease. Please join our family,
and families like us, as we fight for our children, their health and
their future.