Hannah's Story

My name is Joan, and I am from Philippines. My daughter, Hannah, who just turned three, has Congenital Central Hypoventilation Syndrome (CCHS.) She has a tracheostomy and uses a ventilator when asleep. During my pregnancy, I didn't suspect any problems until a week before I gave birth. I was diagnosed with polyhydramnios. My OB said I had too much amniotic fluid. I've never heard of such but she told me not to worry. I did worry though, because that was something not normal right? So I Googled what that means and how it affects the baby. From what I read, having polyhydramnios may mean the baby having a congenital problem. Having no history of a congenital problem in either my or my husband's family, I was convinced to just ignore what I read and stay calm. A week later, I gave birth to a full term beautiful baby girl via C-section.


After waking up from sedation, I was expecting to see my baby. Little did I know that while I was asleep, Hannah was already under observation. The doctor then informed us that they needed to transfer Hannah to the NICU. She had pneumonia, had to be intubated, and put on a mechanical ventilator. That day started the saddest nine months of my life. When Hannah was three weeks old, after a number of failed extubations and series of neurological tests, a sleep doctor concluded that Hannah might have what they call CCHS (Congenital Central Hypoventilation Syndrome.) They said that the best option for her to have a tracheostomy tube and stay in the hospital until she become more stable and we were ready to bring her home with all the necessary equipment. She was already 6 months old when the CCHS diagnosis was confirmed. The PHOX2B genetic test is not available in our country and we had to send her blood sample abroad to have it confirmed. We weren't able to do it earlier because the test is very expensive.


It took us 9 long months to prepare for Hannah's homecoming. It was never easy. There was so much to be done, and a huge amount of money was needed for us to settle our hospital bill (no insurance nor good health care here) and to acquire all the necessary equipment. We had nothing left, because the first 2 weeks of Hannah's stay in the hospital had already depleted all our money. My husband and I were even forced to resign from work. All we had then was our love for Hannah and our faith that God would see us through. Indeed, God is good! He called on so many good Samaritans to help us. He made it possible for us to acquire all of Hannah's equipment, and He made it possible for us to bring Hannah home!


Now, Hannah's 3 years old already! We're still struggling, but surviving. She is a very active little girl, though she still hasn't spoken a word. She is fed by mouth but couldn't eat table food until recently, and is still eating pureed foods. She has had many bouts of infections, but only once has she ever required to be brought back to the hospital. That happened just recently. It was very scary, and staying again in the hospital made me relive all the sadness that I have in my heart because of Hannah's condition. I am very happy to be part of Kids with Vents and thank you in advance for all the things I will learn from all of you. I hope I can share something for you to learn too. God bless all our vent families!

Michael's Story

Hello, my name is Michael.  I was born with a genetic disease called Duchenne Muscular Dystrophy.  DMD is a disease that causes the weakening of skeletal muscles, respiratory system, and cardiomyopathy (weakening of the cardiac muscle).  There is no known cure for DMD and the prognosis is death.  When I was a young boy, somewhere around six or seven years of age, I was told that I probably would not live past the age of 19.  I praise the Lord every day, thanking him that I surpassed the doctor’s projection.  Today, I’m blessed; see I just turned 33 this past spring which is a milestone for a person having DMD.

Through the years, DMD has taken its toll on my body.  From the age of seven, when I could still walk, my muscles gradually began to weaken. As a result, I fell a lot because my legs were weak.  It seemed that when I walked on hard surfaces like concrete, pavement, and gravel I would fall.  I continued to stumble and fall till the age of 12 years old, when I became dependent on a wheelchair.  I lived with my parents until I was 21 years old. At that time I was more determined than ever to make something out of my life despite having DMD. I moved to Woodrow Wilson Rehabilitation Center and began studing Mental Health/Human Services. I graduated there in 2001 with an Associates Degree and Certificate in Peer Mediation through Blue Ridge Community College. I was also married to my wonderful wife Robin by then. In that same year I graduated Robin and I rented an Apartment in Stuarts Draft, Virginia. During that time, I lost the ability to feed myself, and I lost a great deal of weight. I also began having breathing difficulties along with severe Central Sleep Apnea. I began using a BiPap Machine at night and eventually a Pneumobelt in 2003. In 2005 I was placed on a Trach and Ventilator after a serious infection. The doctors told Robin that she had to make a choice.  She could either have me trached or they could administer comfort measures and let me die.  They asked me if I wanted to be trached, and I said yes.  I was facing death, but I heard God tell me “It’s not your time, your work is not done; I am not done with you.”  So, I was trached and vented a few hours later.  I started improving immediately, and by the end of that week, I was well enough to go home.

Once I got home, I was scared but glad to be home.  At first, I was not able to get out of bed or eat.  This lasted about three weeks, sleeping and drinking Ensure four times a day.  Finally, I got well enough to get out of bed however still drinking ensure.  A few days later, I said to heck with this stinking Ensure.  I got my attendant to go to McDonalds and get me a cheeseburger and French fries.  Man that was the best burger I ever ate!  Eventually, things got better and I was gaining weight and breathing great, Hallelujah!

Then, about two years ago, I developed Congestive Heart Failure from my ever weakening heart.  I’ve been a Christian for several years, and my relationship with Jesus has enabled me to get through many trials.  I have salvation through him.  This was reality slapping me in the face; it was time to get serious about being a Christian and stop playing Christian.  The news broke my heart; my heart is literally broken which is how the Lord wants it!  I was given a 70 percent chance of dying from sudden death from a heart attack.  This is the second year of that prognosis and my Ejection Fraction is dangerously low at 17 percent, but who cares about numbers.  By the way this ventilator and oxygen are just accessories, and not my life support.  Let me say this, Jesus Christ is my life support!  Amen!

I began to see the annointing God had on my life. I began taking Online Classes in persuit of a BA in Pastoral Ministries. The same year I came up with a Concept Christian Ministry for the Disabled. Today, we are called Spirit Roller Ministries and we are 501c3 Non Profit; we are also an Affiliate with Joni and Friends Ministries. We have been running a very successful program called MedEvange. We take used/donated Medical Equipment then we give it away free of charge to the needy. We also have a Mentoring Service, Couseling, Advocacy and Empowering them with the Word of God.

The latest bout with my health came this past March, when I started having heart rates in the lower 30's. This condition is called bradycardia which means my heart is too weak to keep a regular rhythm.  It was time for device intervention, and the doctors suggested a pacemaker. They said that the Pacemaker would prevent my heart rhythm going below 60 beats per minute; several doctors were skeptical while my Cardiologist remained optimistic, so I had this major decision to make. I chose the Pacemaker to have more time on this earth to serve Jesus and to be there for my wife and mother.  I was scheduled for April 30. They rolled me down to the Heart Cath Lab, slapped the monitors on me and transferred my onto the operating table.  I heard the doctor come in as the meds were administered; I only remember 2 things as I went out, someone turning this crazy music on and the doctor say, “someone bring me my knives.”  I was in surgery for 4 hours before waking up and saying, “Are ya’ll done yet?”  “Closing you up now Mr. Keen,” someone replied.”  The following evening I was so peaceful.  I stayed at the hospital with my mother and we watched the heart monitor and cried for joy; the surgery was a success and my rhythms were slow and steady.  “Mom,” I said “now I have more time to spend with you and Robin.”  “I know,” she said as she rubbed back tears in her eyes.  I woke later that night to my mother whispering, “Thank you Lord for lending me my son a little while longer.”

Ryan's Story

We adopted Ryan when he was six years old, before he had a trach or vent.  He did have many different abilities like my son, Kyle, whom we had already adopted.  I love giving a family to a child that no one wants, and watching them get enjoyment out of the little things we take for granted.


I remember telling my husband that I didn't think I could adopt a child with a trach or vent, because I knew nothing about them.  God had other plans!  We took Ryan to the children's hospital for surgery, and he went into respiratory arrest, was intubated, and admitted to the PICU.  He was then trached for laryngomalacia.  We miss Ryan's cute little laugh and his cry, but he is healthier with the trach.


Things went okay for the next couple of years, but Ryan's need for O2 kept increasing.  Another sleep study was done, and he stopped breathing 504 times - no wonder he couldn't sleep!  Since then, Ryan has used a ventilator whenever he is asleep (night time and naps.) Sometimes the vent is a pain and annoying, but it is also his best friend. Ryan's need for O2 went way down, and he sleeps much better on the vent.  He also had a laryngotracheal separation to stop his chronic aspiration, and has been much healthier since then.


Ryan was born with Bilateral Open Lipped Schizencephaly.  He also has CP, dystonia, developmental delays, and Lennox-Gastaut Syndrome (a severe seizure disorder.)  He is also non-verbal, blind, has a G and J-tube, and is 100% J-tube fed.  But, please remember to look past Ryan's disabilities, and see his huge smile and what a happy boy he is everyday!

Kimi's Story

My name is Kimi, and I'm a 31 year old with autosomal dominant Emery Dreifuss Muscular Dystrophy.  EDMD is one of the more rare muscular dystrophies.  I was actually first diagnosed with Spinal Muscular Atrophy, but was recently re-diagnosed with EDMD (long story).  I've experienced a faster progression of EDMD than is typical.  I was able to walk as a young child, but received my "driver's licence" at the age of 5.  I was completely wheelchair dependent by the age of 8.  I started experiencing respiratory issues at the age of 11.  From the age of 11 to 13, I was in and out of the hospital for pneumonia.  My saving grace was the Bipap.  Once I started using Bipap at night at the age of 13, I felt much more rested and the occurrence of respiratory illness decreased tremendously.  During this time I also started experiencing cardiac issues, which at the time were thought to be unrelated to my neuromuscular disease.  It later turned out they were part of the EDMD progression.  

I was pretty stable until my Junior year of college.  I got very sick during the 2nd semester of my Junior year, and ended up being hospitalized for 6 months.  This is when I was trached and vented.  I also received my G/J tube during this hospitalization.  I use the LTV 950 and have a 5.5 pediatric Bivona cuffed trach.  At first I was on the vent 24/7, but after 4 years I was able to sprint off the vent during the day.  I now still sprint off the vent on a Passy Muir valve during the day, but must take vent breaks.  In addition to the vent/trach, I have a pacemaker, severe scoliosis, motility issues, GERD, and chronic abdominal, neck, and back pain. 

Now to the fun stuff... I enjoy hanging out with my great friends, shopping, mini scrap booking, card making (visit my Etsy site www.craftykfox.etsy.com), music, and Dunkin Donuts Iced Mocha Lattes.  I graduated Summa Cum Laude with a BS in Bio/Chem from Immaculata Univ, and pursued my Masters in Bioethics at UPENN.  I run a world wide Yahoo group for people affected by SMA called SMAFRIENDS.  I also run the Yahoo group for my college sorority's alums.  I volunteer for the state of PA by serving on a committee that advises the Governor and the Secretary of Public of Welfare on the Medicaid Waivers which allow disabled citizens to live independently in the community by providing them with nurses and/or attendants.  I mainly advocate for those on vents.  Another highlight of my life was being engaged to a wonderful guy named Eric, who unfortunately passed away before we could get married. 

My number one goal in life is to inspire others to do their best.  I personally need to learn how to be thankful for what I have, and hopefully in the process teach others to do the same.  Oh, and I don't want to grow up and be just ordinary!

We Got Something More (by Lori Borgman)

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.  Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more.  Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.  Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule.  Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.  She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.  Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.  Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.  Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away.  It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.  Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news.  It can't be possible!  That doesn't run in our family.  Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies.  It's not a lust thing; it's a wondrous thing.  The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.  Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.  As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.  Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.  Frankly, sometimes you mothers scare me.  How you lift that child in and out of a wheelchair 20 times a day.  How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.  I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.  I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary.  You snap, you bark, you bite.  You didn't volunteer for this.  You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack.  You've developed the strength of a draft horse while holding onto the delicacy of a daffodil.  You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.  You can be warm and tender one minute, and when circumstances require intense and aggressive the next.  You are the mother, advocate and protector of a child with a disability.  You're a neighbor, a friend, a stranger I pass at the mall.  You're the woman I sit next to at church, my cousin and my sister-in-law.  You're a woman who wanted ten fingers and ten toes, and got something more.

(Lori Borgman is a newspaper columnist and author. You can find her at: www.loriborgman.com)

Evan's Story

Evan was born in August of 1996 on my due date.  The only complication of his birth was that the cord was wrapped around his neck.  He was 7 lbs 7 oz and all boy.  He was born with dark brown hair which all fell out and was replaced with snow white curls. Evan was my third child and both of my older children were pretty easy to raise.  Evan however was born with attitude!  

Evan was a skinny baby and a skinny boy, and then one day he started to gain weight.  A LOT of weight.  And everyone kept asking me why.  I had him tested for diabetes and underactive thyroid. All of his tests came back negative, but at 9 years old he weighed almost 110 pounds. Evan always had problems breathing, but we were always told it was asthma and or bronchitis. Later, when he was overweight, we were told it was his weight.  Evan's breathing problems were not consistent with asthma, however.  He would scream "I can't breathe!" and I thought it might be anxiety related to his beghavior problems.  We have a family history of bi-polar disorder and OCD, whcih he seemed to be displaying with his anger and sadness.  By the time he was twelve, though, he was calming down, his behavior was excellent, he was getting taller, and was slimming down.  I thought the bad times were behind us.

Then, one day Evan went to school and, on a dare, he downed 32 oz of tequila straight.  He was not breathing on his own, and was rushed to the hospital where the doctor's said there was nothing they could do for him.  Evan survived, but an MRI showed that Evan had a brain tumor on his brain stem.  48 hours later the tumor was removed.  The neurosurgeon said it was a juvenile pilocytic astrocytoma, not malignant, and that Evan would never have to worry about it growing back.

The location of the tumor, however, made the surgery very difficult, and there was major bruising to his brain stem nerves during it's removal.  Evan has been in recovery since May 2009.  He has regained most of his vision and hearing, he can walk in almost a straight line, and he can vocalize just fine.  However, he can't move his tongue, he can't swallow, and when he falls asleep he forgets to breathe on his own.  So, Evan has a tracheostomy so he can be ventilated at night, and gets all his nutrition through a feeding tube. 

Evan spends his time, and uses his intelligence, working with computers.  He will be 14 years old next week, and is trying to be more independent.  We take it day by day, and try to keep him healthy and happy.

Colton's Story

Colton has been a fighter in every sense of the word since his birth in 2008.  He has led us on a journey, teaching many to think outside the box in terms of medical conditions and abilities.  In the first year of life Colton acquired a custom tracheostomy tube, a ventilator, a feeding tube, glasses, many medications, and many diagnoses. One of the major diagnoses is rare and called "Autonomic Nervous System Disorder" that affects literally almost every system in his body.  Autonomic medicine is all about the central part of the brain that controls our automatic functions that we don't think about.  When this short circuits, the body reacts to things it thinks are happening, but aren't always.  Most of us, if we try to hold our breath, feel when we have to stop and take a breath.  Colton and kids like him don't feel like they are suffocating. They may breathe, but not very deeply.  Or, they don't always feel thirsty even though their bodies are literally dying of dehydration.  It is a rare specialty and even rarer in pediatrics, and there are very few physicians that can even explain the disorder.  The medical community told our family recently, that in this field the science is very young, and science must make advancements before there could be any answers.    

We take each day for the best it can offer, and hope the next will be equally good or better.  We are aware that the instability of the autonomic nervous system within Colton’s body is something we do not understand, nor does the medical community.  We never take the next day for granted.  Everyday Colton greets us with a glowing smile; he does not understand that he is anything other than a two year old little boy who loves everyone he meets.  His body doesn’t agree with the speed that he wants to go, so we have to place restrictions on him so he does not overstress his body.  Colton always feels hungry because of his autonomic dysfunction, to such a degree that a lock is on the refrigerator, along with a restricted diet due to constant weight gain.  

New transportation equipment is being ordered to enable him to have the necessary equipment Colton needs at all times.  We hope to travel to Ohio for testing in the beginning of September for more answers, and are still awaiting final approval from Medicaid that they will cover the out of state funding.  Colton, like so many other chronically ill and medically fragile children, relies on Medicaid to cover most of the expensive medical equipment and medications that would otherwise not be affordable.  Yet there is still so much they do not cover.  Our family, like many others with special needs children, are living on a very restricted budget due to frequent illnesses and medical appointments (that are often a long distance from home.)  Soon we will need a vehicle with modifications to meet Colton's needs.  Despite all of this, we try to keep things as normal as we can for all of our family.  We have nursing assistance for Colton, which helps us tremendously to give Emma (who is 3) the individual time she needs.  We also take some time alone as a couple.  We were an ordinary family, who thought we were going to have a typical baby boy.  Colton is way beyond typical - he is a fighter, a miracle, a brother, and a son who is LOVED!