1) When did you find out there was something different about your child? "Problems started at birth."
2)Does your child have something he/she enjoys doing/saying? Tell me a little about him/her.
"Kenna
LOVES her Ipad, the playground, being outside and the pool. She also
loves bubble baths and chocolate (even though she isn't supposed to eat
by mouth).Kenna is 4. She has big brown eyes and long brown curly hair
that falls past her waist.She is a very happy active little girl. She is
very loved by everyone who knows her. Her dad is a Marine and has been
for 18 years. I am a photographer and she has 2 older brothers 11 and
12. She is extremely girly. She loves anything soft, fluffy, sparkly,
glittery and PINK. Her favorite color is PINK and she loves Victoria's
Secret because of all of the pink pretties, sparkles, and ANGEL
Wings...she LOVES LOVES testing all of the sprays and lotions. She loves
Princess', hello kitty and LaLaloopsy. She asks every single day if she
can go to Disney World. She loves to look at herself in the mirror and
she will be the first to tell everyone that she is a beautiful princess.
She loves music and wants to dance but we can't find a special needs
dance studio and I keep being told that she is a liability. I've
pondered opening a studio for special needs myself. She also wants to
ride horses. She loves them...and cats, scared of dogs. Enjoys the beach
and therapy too."
3)What was your child diagnosed with?
"She was born 6 weeks early and her health issues started at birth. She
had low O2 and fluid on her lungs at birth. She had apnea and stopped
breathing several times. She could not keep anything down-no formulas
and not my milk. She vomited constantly. She never passed the mechonium.
At a week old she was put back into the hosp for a week with a
bilirubin level of 28, breathing stops, dehydration. She came home
weighing 4.11. She was 6.1 at birth. She feeds through a feeding tube in
her stomach and has a gastric stimulator. We are still waiting on an
exact diagnosis on Kenna. What we do know is that she has a
Mitochondrial Disease, just haven't pinpointed her exact type. However,
we do know that she is a carrier for MNGIE which is a Mitochondrial
Disease and we were told if she ever has children that they would have
it. She has slow motility of the esophagus and stomach and gastro
intestinal paresis. She has neuromuscular issues/myopathy, she aspirates
on her stomach contents which has caused some lung damage. She has a
heart arrhythmia. She is developmentally delayed. She has a 3rd copy of
the APTX gene on the short arm of Chromosome 9. Boston
Children's/Harvard is doing a study on our family sequencing out every
gene in our DNA...myself, dad, Kenna and the two boys. She sees several
specialists in Tampa, Gainesville and has a team in Boston. We are
seeing some of her symptoms worsening as she gets older, or becoming
more noticeable, due to the Mito.
4)Who took the news harder, you or your husband?
"I don't think that either of us took it "hard". He has been deployed
her entire life with the exception of a month here and there. I went
into nurse mode. I started staying up every night researching, caring
for her, exploring options. I suppose he took it hard in his own way.
He's not much of a talker/expressionist...and with being deployed and
having some rank and dealing with that and what he has in Iraq/Afghan
and then dealing with her issues via email and phone....I'm sure it’s
extremely taken its toll on him emotionally, he just doesn't show that
side of himself. I've had my moments....I'm the one who has been there
for every single appt, hospital stay, surgery, watched her get worse,
better, then even worse. I've been the one to be told that she prob.
won't survive the first few months, she has failure to thrive, she'll
probably never talk, walk, function as a normal child. She'll never have
a time when she won't have the feeding tube. Her gastric system is not
in good functioning shape. She has slow motility of the esoph, stomach,
and paralysis of the intestines. She will always be on meds, she will
never get better. She will never be cured. There is NO cure, NO
treatment for Mito disease. I have lived vicariously through friends and
other mito families who have lost their children due to Mito. SO, yes,
I've had my moments and I've had to do them alone...and doing it alone
is the hardest part of all."
5)Are there any siblings? How do they response to the disability? "She
has 2 older boys, 11 and 12. They both have Chiari Malformations. My
oldest had major brain/decompression surgery in 2011 and my middle son's
isn't bad enough for surgery yet. They are amazing with her. They love
everything about her and are very helpful with her and very caring and
protective of her. Occasionally they will mention that they miss when I
owned my business before I had her and could work like a mad lady and
was able to go and do and take them everywhere...vacations, theme parks,
etc. Now we plan things around what I can afford (which I never had to
watch before) and how she is, doc appts, hospital stays, surgeries etc.
They are kids...they miss doing kid things but they always say that
they'd never trade it for her."
6)Do you have any support? "The
NO support, the NO having someone to hold me and tell me it’s ok while I
have to mentally digest the fact that my child has a disease that has
taken so many of my friends and fellow mito Mom's babies. I have to live
every single day being her one and only caretaker knowing that there is
NOTHING I can do, NOTHING I ever could have done, and NOTHING I ever
will be able to do to fix her and any bad day could be the beginning of
the worst."
7)Are you offended by questions from strangers? "I've
NEVER been offended by questions of curiosity about her/her condition. I
am greatly offended by stares instead of inquiries, parents who pull
their kids away from her, and just completely ignorant
questions/ignorance in general. She's just like everyone else. She
hurts, she cries, she laughs, she gets sad, happy, excited and she just
wants to accepted and that's all I've ever wanted for her....not to be
stared at like she is some kind of creature and not the beautiful child
that she is. THANKFULLY, she doesn't realize what people are doing,
saying. Rarely do we have anyone verbalize the 'ewww yucks' around her,
but she is delayed so stares and pointing doesn't register with her. She
doesn't realize that she is sick or different. It’s just life as she's
known it since the beginning."
8)Does your child attend school? If not, what are your plans? "She
does not attend school, she never has. Her life has consisted of appts
and therapies daily and I've devoted myself/life to her care. I gave up
my business to take care of her 24/7. I've recently started another
business in photography and in the middle of getting my master's in
documentary photography and want to do a long term project
photoing/documenting children LIVING, THRIVING, BEING KIDS, BEING ALIVE
through their illnesses (adults as well) and not succumbing to it, or
documenting a disease from start until the end and how the person lives
and emotion etc. I plan to continue to keep her home and care for
her/teach her and involve her socially elsewhere. I have little trust in
anyone with her. Family members do not even watch her, her Dad has
never watched her for longer than me to make a trip to the grocery store
alone. I am OVER protective and I know that I am but I know what I am
facing and I know what I am fighting and I have NO plans on missing
anything about her, I have no plans on losing time due to someone's
negligence. She has too many health issues to put my trust in someone
else to know how to deal with and care for them all. I have educated
myself, been through nursing school, I deal with the docs one on
one....NO ONE knows her like me and she has been THE biggest gift and
blessing in my life. I owe her my devotion and care....she has forever
changed me. I'm crazy mad in love with her. I can't imagine ever living
my life with her not in it. It breaks my heart just saying those words.
All I have ever wanted was a curly haired little girlie girl...God
couldn't have given me a more PERFECT version of my vision. She has made
the entire family love more, feel more, have more compassion, think
more and have more empathy than ever before. She motivates us all to be
better. "
9)What advice would you give to a parent that was just told that their child has a disability?
"ADVICE for other parents: DOCTORS ARE NOT GOD. All that they can do is
give you a diagnosis based on what they THINK is wrong with your child
based on the symptoms and tests run. DO NOT take what your doctor says
to heart. Go home after receiving ANY diagnosis. Make 2 lists. One
Titled: Child the other titled Diagnosis. Write down all of your child's
symptoms under his/her name, write down the symptoms of the
diagnosis...check off all that match...if you have mostly matches, the
go from there with your doc...if you have few matches, then get a second
opinion. You have the right to explore a 2nd, 3rd, even a 4th opinion
until you are confident that you have met the right doc for your child.
YOU HAVE THE RIGHT TO DENY ANY SERVICE/TREATMENT that you are not
comfortable with or feel educated enough about. Most of all...YOU ARE
YOUR CHILD'S BIGGEST ADVOCATE. IF YOU DO NOT FIGHT FOR YOUR CHILD AND
HIS/HER RIGHTS, CARE, TREATMENTS, THERAPIES, PLACE IN THIS WORLD...NO
ONE WILL. BE A VOICE FOR YOUR CHILD. DO NOT fall apart and drown
yourself in the diagnosis and probable/expectable prognosis. DO NOT GIVE
IN, DO NOT GIVE UP. NO ONE knows how your child's story is to begin and
end and how the chapters in between will play out other than the great
author of life, God, himself. If you aren't religious, I'm not saying
you have to go out and become the mightiest Christian of all, but find
SOMETHING to believe in, whether it is church, support groups, therapy,
SOMETHING. EVERY special child is assigned at least 1 special parent. We
parents are like a plant. We need food (research/education on our
child's condition), light (acceptance of the condition),
air/oxygen...without that, nothing lives (support...without some kind of
support, it is so easy to implode, become depressed, stressed,
overwhelmed). DO NOT BE AFRAID TO ASK FOR HELP. I need a housekeeper.
Can I afford it, NO...but I will make it work because I am overwhelmed
with 3 kids, her needing me 24/7 and the house. I have not had a break
in 4 years. This would be a weight off of my shoulders. If you need a
nap....ask for help. If you need to go for a walk just to
think/breathe...ask for it...and don't feel bad. I'm learning this the
hard way. My heart condition is getting worse; my health is not what it
should be because I stopped taking care of me to put ALL of me into her.
You can't do that. You still have to take care of you in order to be
able to take care of your child. Include your child. DO NOT make you
child feel any different than any other member of the household. If they
need devices, monitors, meds...do the necessary and then anything
beyond that, threat them as though they are the most normal of children.
That's all they really want. Include them EQUALLY. Don't with hold
discipline because in the end...you have no idea what the prognosis of
your child will be and they still need to know right from wrong, reward,
consequence, etc. Most of all RESEARCH RESEARCH RESEARCH SOME MORE. We
are living in a generation and world of technology. Take full advantage
of it. LEARN your child’s diagnosis inside and out. KNOW your child’s
medications inside and out. Keep a list of side effects and study up on
interactions. NEVER start a medication without checking FOR YOURSELF the
interactions between it and their other meds. Docs have other patients
and things can be over looked. FAMILIARIZE yourself with alternative
treatments...holistic, therapeutic, and natural massage, etc. I've found
that some of these help TREMENDOUSLY with other treatments and some
have even taken the place because the side effects for the
pharmaceuticals were so bad. NEVER EVER NEVER give your child
anything....even OTC without checking with your doc first because some
ingredients can interact with other meds or even effect your child's
condition. SIT DOWN with your insurance agent/case manager, or state
medical/Medicaid provider/worker. Find out what you are entitled to as
far as equipment, travel, formulas, diapers (for older children), etc is
covered. Take advantage of what is available to you. If you are paying
for insurance, get your money's worth. If you qualify for Medicaid or
have Medicaid via SSI, find out what will be and will not be covered. We
have Tricare which is military insurance. My daughter was able to get
her wheel chair covered completely which she desperately needed and we
were able to get her a hospital crib which is completely padded and
completely encloses with a mesh canopy that zips and has padded side
rails. It ELEVATES and has been a GOD send for her GI issues and sleep
safety. Of course her meds, formula and internal supplies are covered.
Explore SSI rights/benefits for your child. You never know when you will
need them or they will as an adult. Apply now and put it back later for
them to have if you are able to do that. LOVE YOU CHILD. STAND UP,
PROTECT, FIGHT FOR YOUR CHILD. EDUCATE YOURSELF ON EVERY SUBJECT FROM
DIAGNOSIS, TO SCHOOL OPTIONS, TO HOME NURSING OPTIONS, TO WHAT IS OR IS
NOT COVERED BY INSURANCE. INVESTIGATE YOUR DOCTORS....READ UP ON THEM,
FIND OUT IF THEY HAVE MALPRACTICE SUITS, READ REVIEWS, FIND OUT HOW LONG
THEY HAVE BEEN IN THEIR FIELD ETC. RESEARCH YOUR HOSPITALS. JUST
BECAUSE IT IS A GOOD HOSPITAL DOESN'T MEAN THAT THEY ARE PROFICIENT IN
YOUR CHILD'S DISORDER/NEEDS. DON'T BE AFRAID TO TRAVEL TO FIND THE
HEALTH CARE THAT YOU NEED. DON'T LET FINANCES HOLD YOU BACK FROM GETTING
THE CARE YOUR CHILD NEEDS AND MOST CERTAINLY DESERVES. THERE ARE
THOUSANDS OF ORGANIZATIONS OUT THERE FOR KIDS LIKE YOURS AND MINE AND
THEY ARE THERE JUST FOR THIS PURPOSE. THEY CAN HELP YOU IN AN EMERGENCY
IF BILLS GET BEHIND, THEY CAN HELP YOU WITH RELOCATING TO BE NEAR THE
MEDICAL CARE THAT YOU NEED...THEY EVEN CAN FLY YOU TO A HOSPITAL WHO
SPECIALIZES IN YOUR CHILD'S CARE. CHECK YOUR LOCAL ORGANIZATIONS AND
THERE IS ALWAYS THE GIFT OF THE INTERNET...AND THE AVAILABILITY OF
ON-LINE FUND RAISING. ASK QUESTIONS, MAKE FRIENDS, JOINING GROUPS, GET
INVOLVED...ADVOCATE...LOVE YOUR CHILD. Don't be afraid of him/her. Don't
be afraid of the illness. Don't live every day thinking that any day
could be his/her last. Stay positive even if it’s the hardest thing to
do some days. You child is only as good, positive, happy and willing to
live as you are. NEVER GIVE UP because you are most definitely not
alone. If you allow it, this child will be the most flawless perfect
child ever to grace your life. You will feel more, learn more, and be
opened to emotions that you never knew existed if you just open yourself
and mind. I promise you there will be hard days. There will be days
that you don't want to get out of bed, that you can barely stand the
thought of walking into another docs office, barely stand to look at
another med, but push through. We are never given anything bigger than
we are capable of handling. You will make friendships like no other, you
will bond with people are such deep meaningful levels, unimaginable.
Feel proud....you are a chosen one....you were chosen to love and care
for the most special of human kind. Embrace it and let it change your
life for the better. I promise, no matter the outcome, you will be
grateful to have had every single moment with that child. There's just
something so amazing and about special children."
I have set up an account at a local TD Bank. The account's title is "Kenna's Family Disney Trip." There're coin machines at TD banks so you many be able to bring in your loose change and help this little girl go to Disney. You may also send a check payable to her account Kenna's Family Disney Trip to Maribel Sanders 74 Tower St Lake Placid, Fl. 33852 Thanks!!!!
