Heartbeats for Mito
JUNE 2, 2010 VOLUME 1, NUMBER 1
Membership Continues to Grow
It’s hard to believe when we started the website back in 2004 we had a total of 16
members. Originally the intent was to help get my first fundraiser off the ground.
We did not realize the full scope of the website, since it would become a vessel for
other families and guests. As the months went by, more and more people took
notice. What once was only supposed to be running for a few months is continuing
to help spread awareness for such a devastating disease. YOU made it happen!
We are happy to announce we now have 68 members and many take part in Eli’s
Angels, one of the charities we support!
Eli’s Angels’ mission is to send children with Leigh’s disease, mitochondrial or
metabolic disorders a gift, for them to enjoy, create memories, know they are
“Sometimes when special and provide support to the families who care for them. Eli’s Angels is a
we are generous in Public Non-profit Organization pursuant to Section501(c )(3) of the Internal Revenue
small, barely Code.
detectable ways it If you wish to become a part of their wonderful program, you may either fill out a
can change referral on our response form at Heartbeats For Mito or visit
someone else's life http://www.elisangels.net for more information.
On Common Ground
If you are like many parents, then you never expected to hear the words
“Mitochondrial Disease.” For many of us, the diagnosis offered little or no solace to
the unanswered questions that loom in our minds. Instead Mito only brings up more
mind-boggling issues, as we try to grab bits and pieces of information. As parents
and individuals alike, we want concrete answers; not the probabilities of what may
What is even more puzzling to the medical profession is the randomness of
abnormal test results. For Mitochondrial Disease is quite deceptive and can lay
hidden despite the rounds of testing such as blood work, MRIs and CT scans. Even
muscle biopsies aren’t fool-proof. As my physician explained, it is either a hit or
miss. Even a negative muscle biopsy isn’t a reason to dismiss the susceptibility of
Mitochondrial Disease. Additional testing and case history must be evaluated also.
So now you have the diagnosis…what’s next? How do you cope? What milestones
will my child achieve? What can I expect?
Mitochondrial Disease affects each person differently. Some children may hit all their
milestones right on target and have a very mild form. Others may struggle and have
severe complications. The best advice I can give is to remain positive and cheer on
your child’s accomplishments. If you are religious, pray.
Want your child on our prayer list? Fill out our response form online or send an
email to the address below. You do not need to be a member to ask for prayer.
On Common Ground- continued from page 1
Our section “A Parent’s Heart” gives an in-depth look into several families lives. We
encourage you to take some time and read what these parents experience or have
experienced. If you wish to contact a family to learn more, simply drop me a line at
Thanks to everyone who has joined Heartbeats for Mito. A special thanks to those
who have come forward and shared their story in our “A Parent’s Heart” section. We
continue to get rave reviews from guests coming by and reading the individual
stories. Your children are the heroes of Mitochondrial Disease, bravely facing each
obstacle with dignity and grace.
If you would like to take part in “A Parent’s Heart”, please fill out the response form
or send me an email at HFMito@cableone.net. Please allow 48 hours for a response.
In the Spotlight- Mikaila Salensky
Whenever Mika ventures outdoors, it seems the butterflies are naturally drawn to
her. Perhaps it is because of her gentle spirit and the deep love she possesses for
these beautiful creatures.
Mika was diagnosed with Mitochondrial Encephalomyopathy in February 2005. She
Mikaila is holding a has a significant complex I and a minor II and III.
butterfly. For Mika many of the days are spent within the confines of home or a medical
setting. She recently was in Metabolic Acidosis and March was quite difficult for her
family. Unfortunately Mika’s condition continues to worsen.
Her sister, Jaden received 2 awards for her school project on Mitochondrial Disease.
She often speaks on her sister’s behalf. We are proud of you. Please look for an
article about Jaden in our next newsletter.
Big sister Jaden shows
Meet Our Mascot “Hugo, the Hug-O-Heart Bear”
We are also happy to announce the edition of our new mascot: Hugo-the Hug-o Heart
Bear. At this time Hugo is on the designing table and will soon have a place on the
If your child would like to draw what he or she feels Hugo should look like, send their
pictures to me and we shall post them on the site. Pictures (jpg, gif, bmp) may be
sent to: HFMito@cableone.net.
Hard copies sent to:
Ann Eide 819 Spruce Street Columbus, MS 39702
Please note first names will be displayed only for security reasons. Good Luck!
Help design Hugo.
Map it! Find out where our members are!
I thought it would be interesting to see the locales of our membership. We have
members both in the United States and living abroad. So upon compiling data, here
are the states where our members reside: California, Colorado, Florida, Georgia,
Illinois, Iowa, Kentucky, Maryland, Michigan, Mississippi, New Jersey, Ohio,
Oklahoma, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee,
Texas, Vermont, Washington, and Wisconsin. We also have members residing in
Canada and Italy. Your state isn’t listed? Send me an email and I’ll add it.
Scroll down to page 4
Huggs and Smiles- Happy Mail Underway
There are many ways a child’s day can be brightened: a gentle hug, a smile, a
In the past few months, I have been able to do some shopping on a small scale and
have been putting together individual care packets. While on a limited budget, I’ve
already sent out packets to five children.
No packet is exactly the same, but I am trying to make each one age and/or
developmentally appropriate. Some of the packets have included a music CD, stuffed
One of the best ways animal, or a coloring book.
to relieve your mind
of worries is to I am currently looking at local stores for donations, such as toys that come with
phone a friend. If kid’s meals. Thanks to Kathleen Long Bostrom for her recent donation! Hats off to
you need someone you!
to talk to, send me Check your mailbox next month- your child may be the next recipient!
your phone number
and I’ll call you. Helpful Links
For information on Mitochondrial Disease:
www.umdf.org United Mitochondrial Disease Foundation
www.mdausa.org Muscular Dystrophy Association
www.mitoaction.org Mitochondrial Disease Action Committee
www.emdn-mitonet.co.uk Children’s Mito Disease Network
From Ann’s Desk
It has been a struggle to keep the site updated and I do so much appreciate your
C/O Ann Eide kindness. We are hopeful that in the next few weeks the laptop problem will be
finally resolved and can keep up to speed.
819 Spruce St
For those who may be unaware, my health has not been stable for several weeks.
Columbus, MS Because of the severity of symptoms, I may undergo another muscle biopsy to try
39702 and determine what complex I have and re-confirm the Mito diagnosis. How I dread
it, as the first one was havoc, both mentally and physically.
net I continue to frequent the hospital for fluids, as well as increase pain meds. So if you
do not hear from me, when you email me or don’t see notes in your child’s caring
beatsformito.org bridge pages; it is because I am having down time. Remember I keep your children
close in prayers and thoughts.
We have many prayer requests…I ask you to visit the prayer request page and visit
the listed sites-since the page has not been updated recently.
In addition-as soon as the site is working to its full potential, then I will select a
featured child of the month.
And as always, keep on praying for a cure!
Ann Eide, Founder and Webmaster of Heartbeats for Mito