The Brave Little Soul

The Brave Little Soul
By John Alessi

Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Kayli's Neurologist reports on her Brain MRI. Original blog date Sept. 1, 2011

Kayli's Neurologist reports on her Brain MRI

by Kelly Essem Whistler on Thursday, September 1, 2011 at 5:20pm

Kayli's neuro called just now to discuss her recent brain MRI, taken 2 years after her 32 minute cardiac arrest.  Kayli now has a diagnosis of 'Diffused Brain Atrophy' secondary to a Hypoxic Event.  Simply put, Kayli's brain is complete...it is all there, only smaller.  Her brain is only apprx 1/4 the size of a "normal" brain her age.  Although Kayli's brain was completely intact, and fully functioning at birth and up to the cardiac arrest, the neuro stated it now compounds the primary diagnosis of T18. 
 Questions we asked:
1.What would you give as a prognosis, will Kayli's brain loss ultimately take her life? A: No, but Trisomy 18 has many complications and will likely be what takes her life. You can talk with a geneticist, I don't know enough about T18. (At this point, I "educated" the dr as to the spectrum of T18). :D
2. Will Kayli loose any more brain matter? A: No, her brain will not get worse nor better.  Her function can get better though.
3. Is there anything we can do to help Kayli's brain growth? A: We do not know a lot about that, but there are studies of brain growth clinical trials for Cerebral Palsy and Brain Atrophy in Germany and Georgia.  If you choose to consider experimental Clinical Trials, you can take her to Duke University in GA and talk to them about brain stem cell transplants. They might have support groups there or online for you.
4. Is there anything we can give her to enhance her brain growth/function, like DHA? A: Yes, DHA will help minimally and it is in her formula already.
5. We were told if her head circumference is larger, it means her brain is growing.  Is this true? A: Yes, her brain can grow, but it will not grow back.  She will always have only 25% of her brain. From what we understand, you can enhance the function of her remaining brain but she will never have a complete brain...it will always be diffused (smaller).
6. What do you think about Kayli's brain given her history of a 32 minute cardiac arrest.  A: I am impressed with her functioning level. I have never seen a child or person alive with such extensive brain loss.
7. Have you ever heard of anyone living after a half an hour cardiac arrest? A: NO, I didn't know that was possible. I am amazed that she is able to function at all.  You two have obviously taken great care to ensure her best care.  I have known of only 5 or 10 minute brain trauma being alive and functioning, and that long is rare. It is remarkable that she is not only alive, but functioning with such a long amount of time without oxygen. Very remarkable... I've never seen or heard about that length of time!
8. Kayli has 6 at home therapies and 3 rehab therapies to help her brain co-ordination and function. Is there anything else beyond therapies that we can do to help her progress further, easier, or faster? A: No, that is GREAT that she is in so many therapies.  That is why she is able to function! She is doing so well.
9. Would you be willing to keep Kayli as your patient even though she has T18 and an extensive history? Are you able to care for her, watch her med levels, adjust her meds, etc? A: Yes, definitely I will keep her as my patient! I will get her blood levels and we will make the adjustments over the phone so you don't have to bring her back in for that.
Hubby and I are sad about the loss our daughter has suffered, yet proud and amazed that our daughter is not only proving she IS compatible with life but is Loving life with T18 AND Kayli continues to challenge the neurologists by surviving and gaining functions after what is likely one of the longest Cardiac Arrests documented!
As far as Hubby and I, we will continue to advocate for Kayli, and follow her lead as we try to stay one step ahead of her and learn from her all at the same time.
May I remind you what I found in Kayli's brain MRI?...... a large heart shape! One of her ears is heart shaped, the other is in the shape of an upside down heart! Kayli is made of hearts! :D

Parents of Special Needs Kids ROCK!!! Original blog date May 9, 2011

Parents of Special Needs Kids ROCK!!!

by Kelly Essem Whistler on Monday, May 9, 2011 at 7:31am

30 Reasons Why Moms and Dads of Kids With Special Needs ROCK

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes to help our kids  learn something new.

4) Because we have heard doctors tell us the worst, and we weed through their information to take what will benefit our children. Take THAT naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we don't notice the stares, the comments, the rude remarks...our love and proudness outshines them all

7) Because we manage to get ourselves together and get out the door looking pretty damn good.Well, at least we make it out the door!  Heck, we even make sweatpants look good!

8) Because we are strong.  Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, developmental therapists, vision therapists, hearing therapists, teachers, researchers, nurses, equipment specialists, supply clerk, inventory control, pharmacists ,co-ordinators, schedulers, family therapists, child advocates, speakers, accounts payable/medical bill specialists, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate, ice cream, or fried food (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our friends, of course.

14) Because we can adapt to minimal sleep.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing and advocating for all our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever                                                                                                               
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20) Because we take our knowledge learned and pass it on...to others, or to help our other children
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21) Because impossible doesn't mean limits in our world, it means a goal.
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22) Because we learn from our children and understand they have more to teach us than some adults do!
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23) Because we  know a world where trust takes on new meaning
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24) Because to the world we are one, but to one...we are the world
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25) Because although we once thought we couldn't do it, we've found...we can!
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26) Because when others feel sorry for us, we only see how Blessed we are and we pray for them!
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27) Because we get to savor every developmental milestone longer than other parents do
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28) Because we witness miracles all around us

29) Because we are humbled by the courage our children have
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30) Because every  birthday celebrates 365 days joy, triumphs, love, faith, hope, togetherness, Love, and Peace that we know we are where we are meant to be!

Our Family of Blessings. Original blog date May 21, 2010

Our Family of Blessings: Summary of my family

by Kelly Essem Whistler on Friday, May 21, 2010 at 12:21pm

I was asked to write a summary of our family, and thougt I'd share it on here with you:

Children are our Blessings in our life
At first glance, we may seem like the typical American family.
We are an educated family of 6. Our oldest son, Steve (17), is a junior in high school who loves baseball, welding, Nascar, and engineering. He has a part time job, and keeps his grades a priority, even in honors physics. Jacob (10) has a high IQ and has a unique ability in figuring things out while observing things all around him. He taught himself to ride a 2 wheel bike at 3 years old, and continues his love of bike riding. He loves to submit himself to an imaginary world while building train sets and is a natural fisherman. Nicholas (nicknamed Niko) (3) is our active little boy who shares a love of trains with his brother, and has a huge heart for helping others (no matter their age). Niko loves books, cuddle time, and has a desire to follow his older brothers whom adore him completely. Kayli (1) smiles, loves her baths, and has a spirit about her that has taught our family and the community so much, without even speaking a word. Although we interact, dream and love like a normal family, our circumstances are anything but typical. Each of our blessings has a serious - at times even life-threatening - medical condition.
One year old Kayli, was born with Edwards syndrome (Trisomy 18), a rare genetic disorder caused by extra material on the 18th chromosome. Kayli already has beaten the odds - half of all babies with the disorder are stillborn - only 10 percent live to their first birthdays. Kayli has certainly proven medical knowledge is disadvantaged when up against faith in God’s plan. She has surived and then thrived through open heart surgery at 4 months of age, a 32 minute cardiac arrest, endocarditis (infection of the heart), sepsis (an blood infection), a nursing accident that resulted in a trach, a surgical accident whereas the surgeon placed a feeding tube in Kayli’s colon instead of the proper placement in her stomach, which resulted in fecal pneumonia, additional surgeries, and a large abdominal hernia.
Niko (Nicholas) has an impressive, inoperable brain tumor , set in the Pons and Medula of his brain stem, and deep in the Cerebellum. Niko was originally diagnosed with Ganglioglioma (cancer) Sept. 15th of 2008. To confirm this diagnosis, Niko had a craniotomy for a biopsy. Loyola neurosurgeons, and Children’s Hospital of Philladelphia (CHOP) neurosurgeons concurred with the diagnosis upon examining the biopsy slides. Doctors in Chicagoland area, and at CHOP are now baffled with Niko’s tumor because although it was diagnosed cancerous…..it is not growing! Niko once lost his words, fell a lot, and woke up one day confused when we told him he knew how to go potty on the toilet (he no longer was potty trained). Now, he has regained words (although he is sometimes difficult to understand), is potty trained again, and wears braces to help his equilibrium difficulties when walking. Niko has a port in his chest that was to be used for chemo treatments. He has not had to endure the chemo treatments yet, as he is fighting the tumor on his own terms! Niko’s current treatments consist of port flushes every month, MRIs every 3 months (to monitor tumor growth), and a vigorous IEP schedule working to adapt his speech and motor skills challenges. Niko is very tolerant of his frequent trips to Loyola, and effortlessly shows us his amazing ability to adapt to his unique life challenges. Niko’s spirit inspires many people, and thus, he was chosen as a poster child for Make A Wish with Panera Bread a partner in sponsorship!
Brother Jacob, has Eosinophilic Esophagitis (EOE), which currently has no known treatment or cure. EOE is an abnormal number of white blood cells in the esophagus that causes swelling, and difficulties swallowing. The EOE is deteriating Jacob’s esophagus and is causing considerable scarring. With considerable scarring, comes a pronounced risk of cancer. Jacob was recently in a case study to help find a treatment for this condition. He is our hero! The trial medication did not help Jacob, but that did not deter him from helping others. Jacob also has mild autism (PDD) which challenges is social abilities, and severe attention deficit hyperactivity disorder (ADHD). In addition to his ADHD impulsivity, he has minimal natural consequences because he also adapts to Sensory Integration Dysfunction which limits his ability to feel pain triggers. Jacob’s life was threatened again just last year, because he had appendicitis and was not able to tell us the typical pain symptoms of the life threatening condition.
Eldest brother, Steve, has degenerative disc disease, which caused him to break his back while playing baseball two years ago. Degenerative Disc disease is not commonly found in patients younger than in their 70s. Steve was has endured 5 spine surgeries, and MRSA of the bone (from surgery). We almost lost Steve to MRSA because he is allergic to the two known antibiotics that fight the staph infection resistant to antibiotics. Steve will always be limited in his physical abilities. Steve continues to strive for his best in everything he does! Although he loves to work with his hands, he is researching how best to apply his great gift to retain academic knowledge and still apply his need to be hands on, with the limitations he adapts to.
I, Mom, am a former social worker, and cannot think about returning to work until the frequent surgeries required for my children are over. I have also been challenged medically of recent. I have a mystical MS diagnosis, with an abundance of documented brain lesions. Upon doing a spinal tap for the MS diagnosis, the neurologist and infectious disease doctors have encountered an inexplicable condition that appears to be chronic. I am currently undergoing additional tests to figure out the extent of my condition.
Our family has adapted to the scary hospital visits while one parent comforts the hospitalized child (never leaving them to endure the visit alone), and the other parent acts as a single parent at home. We often wonder how we survive the draining medical challenges and our children's growing medical expenses, then apply our faith and trust in the Lord. We have recently (fortunately, temporarily) lost our private insurance, due to my husband’s lack of working hours (he is in a union). Rob was laid off, due to the falling economy. Fortunately for our family, he is working again and we are hoping to get his private insurance again in Oct. 2010. We have sold many of our possessions at yard sales last year. We choose not to burden our community with our challenges, but would rather share our story to spread our faith in God, and loving support for our inspirational children, we call BLESSINGS. Our family is trying to focus on the positives in the midst of so much uncertainty.
The following is a quote from a newspaper article written about our family:
"Despite their struggles - perhaps because of them - the family is a loving, giving, tight-knit group. During one of Kayli’s frequent ER visits, Jacob wrote his sister a note telling her how much he loved her, and Steve sewed her a blanket. "Each one of our kids has adapted to the challenges in their life. They are resilient, and they are blessings," Kelly says. "We are just trying to survive and to keep it positive."

Kayli's surgeries: Nissen wrap, abdominal hernia repair. Original blog date April 13, 2010

Kayli's surgeries: Nissen wrap, Abdominal hernia repair, Exploritory abdomen (intermitent blockages)

by Kelly Essem Whistler on Tuesday, April 13, 2010 at 12:44pm

Yah!!!! Kayli is out of surgery and getting comfortable in her PICU room! We came up to the floor and saw her rolling through the halls! :-) She did GREAT! The surgeon was able to get a good central line in her left femur artery. He did a Nissen fundoplycation (wrap) so if she refluxes there is less chance for her to aspirate (reflux into her lungs, which can cause pnemonia). He was also able to close her abdomenal hernia and made her exterior scars prettier. :-) He was able to pull out her intestines and get a good look at her many adhesions from previous surgeries. Her colon is unexplainably enlarged now, but no other abnormalities were found there. The surgeon did find a Meckels Diverticulum in her Illius (small intestine). This is a congenital (birth) condition found in only 2% of our population. If the Meckel has thickened, it can cause bleeding ulcers (which can lead to death). Fortunately for Kayli, the surgeon had a reason to go in searching and happened upon the Meckels (hers was thickened already). This condition is not the cause of her digestive problems. It was just a lucky catch! Things happen for a reason...the "other" pediatric surgeon missed it and if we didn't acquire this surgeon's help, it would have gone unnoticed! The Meckel is being biopsied, but the surgeon thinks it was on it's way to doing harm to Kayli because it was already thickened!
The digestive problems and enlarged colon are solely due to a functionality problem that came upon her when the "other" surgeon accidentally placed her G tube in her colon instead of her stomach. Unfortunately for Kayli, she will most likely suffer from the affects of the mishap surgery for the remainder of her life.

Upon seeing Kayli now, in her PICU room:
Kayli has been very restless. Coming off sedation, she was very angry with the nurses. She woke up crying vocally, turned red, and had many tears. Kayli was in a lot of pain, which can cause an increase in seizures. She was having 15 second duration seizures about every 30 seconds. Her heart rate shot up to the low 200s and she de sated a few times into the 60s while having seizures in her PICU room. The attentive nurses and doctors here are supporting her recovery with many seizure meds and pain meds. They have noted aloud "Kayli is fighting the meds we are giving her"! She is proving once again she wants things her way, and has already presented her temper tantrums to them (right out of surgery!) lol She is sleeping peacefully now on a hefty dose of pain meds and seizure meds that make her pretty sedated.

Many commens have been made about Kayli's adorable "tu tu" outfit from DisneyWorld, her gorgeous long eyelashes, and yes....they've even commented on the many blankets from home (so she smells our scents instead of the hospital smell). The nurses and doctors here are supportive of her stubborn demeaner and acknowledge her temper tantrums as a strength of determination and a will to live.

Thank you all for your very generous prayers and support!!! You have made a difference in our lives today! I looked upon you for supportive words and prayers and you delivered!!!! I am so grateful for you, my family! I was once told by a close friend of mine.....friends are the family you choose! I couldn't agree more!!!

Kayli and her G tube journey. Original blog date Dec. 24, 2009

Kayli and her G tube journey

by Kelly Essem Whistler on Thursday, December 24, 2009 at 8:00am

Kayli had surgery in the Emergency OR yesterday. 2 weeks and 6 days ago she had a G tube placed in her abdomen to replace the NG tube in her nose (for feeding). The surgeon placed the G tube in her colon instead of her stomach. Kayli was vomitting brown and green fluids. She was weak, her heart rate was in the low 80s. Kayli was in pain. She was having seizures. The dr increased her blood pressure medicine because her blood pressure wasn't stable. Kayli developed pnemonia because she apirated the discharge she was throwing up. The surgeon did not recognize the symptoms Kayli was showing. Upon asking questions, I was able to figure out that she wasn't absorbing the stuff they were getting through her G tube. I also came to the conclusion that the pnemonia was from the brown and green stuff she was throwing up (poop). I relayed me concerns to the surgeon, and she finally realized the extent of Kayli's condition. When Rob and I got back from our Make a Wish trip and realized how bad she was doing (they did not relay to us the extent of Kayli's condition), we asked for a GI dr. to examine her. We were shocked to discover the medical team hadn't explored this option. The GI dr ran some tests and found Kayli's G tube to be placed in her colon instead of her stomach. Kayli wasn't absorbing the medicines, nor the food she was getting through her new G tube because our colons do not absorb. Our colon is just a "storage area". Kayli was throwing up because they were filling her colon past the extent her colon could contain the fluids. The surgeon said this is the first time in twenty years she has ever done this. Unfortunately, it happened to our daughter. I asked the surgeon if it was because Kayli had an abnormal anatomy. She said "no, Kayli's anatomy is normal, I just placed it wrong". The surgeon "guesses" that when she pushed the G tube in, she took the colon with the tube. She said the tube went through her colon, and into her stomach. Keep in mind, the surgeon also punctured Kayli's instestine when originally placing the G tube and had to go into her abdomen to patch the hole. The surgeon can only guess as to why she did this. She can not explain for certain how or why she placed the tube the way she did.

Going into surgery yesterday, Kayli was malnurished. She has lost more than 2 lbs. since the surgery. The pnemonia she developed is from feces in her lungs. She is now getting triple antibiotics, since feces is toxic to that part of her body.

The surgeon went in yesterday to pull out the G tube, patch her colon, and put the G tube in her stomach. When the surgeon took the G tube out of her colon, Kayli's feces poured out "free" into her abdomen. The surgeon cleaned it out as best as she could.

Kayli will not be home for Christmas now, but is in the PICU (pediatric intensive care unit). She is in extremem pain (which they have not been able to control for her). She is not able to sleep because of the pain. She also has a fever greater than 102, coming out of the surgery. The surgeon stated it is normal to have a low grade fever, but not more than 101.

Please say a prayer for her. She is stable, as she is a strong, independent baby. Unfortunately, the boys have not seen her for weeks. We are very sad that she will not be able to spend her first Christmas with our family. Rob and I will be visiting her frequently, but it will seperate our family, since the boys are not allowed to see her due to the hospital's "nobody under the age of 18 allowed".

Going forward, I hope you all have a very Merry Christmas! I am excited to be celebrating Jesus' birth! I am just as excited to see my boys open their presents (this always brings me such joy!)

God Bless you all!

Love Always,
Kelly and family

Second article about my family in the Courier Newspaper. Original blog date Oct. 1, 2009

Second article about my family in the Courier Newspaper

by Kelly Essem Whistler on Thursday, October 1, 2009 at 7:12pm

Whenever I step foot into a hospital to photograph an assignment, a flood of memories overwhelm me. I'm reminded of visiting my father in the hospital as he was losing his battle with lung cancer. Maybe it is the smell of disinfectant that hits me. Maybe it's the incessant sound the medical monitors give off. Or it could be the movement of strangers circling around me at such a vulnerable state, which create beads of sweat on my forehead. I told myself I would try to steer clear of hospitals after my father passed. They make me nervous. Even though they are meant to be recovery zones, they are a symbol of loss to me.

A display of sheer hope by Kelly Whistler, of St. Charles, got me through this one.

I first met the St. Charles woman and her husband Ken — along with, and their four children — when former staff writer Charity Bonner and I followed a lead given to us by Maggie Dempsey, the homeless liaison for Elgin School District U46. We were told we were meeting a family in dire need of a miracle. I was not sure that walking into their lives would be a good move for me.


» Click to enlarge image

Kelly Whistler holds her 3 month-old daughter Kayli in her arms at their home in St. Charles. Kayli was born with a chromosomal defect called Trisomy 18, also known as Edwards syndrome. The condition has given Kayli a Ventricular Septal defect and an Atrial Septal defect, which affect her heart. This causes her to work harder having her heart pump faster for needed oxygen and blood circulation. Kayli has been on Hospice since her birth but her significant weight gain has given confidence to doctors who aim to operate on her heart at Children's Memorial Hospital in August 2009.
(Marina Makropoulos/Staff Photographer)


RELATED STORIES
• Video: Walking with the Whistlers

How to help
If you would like to help the Whistler family, send checks or donations to:

Loving Life Fund

c/o Kelly Whistler

Associated Bank

300N. McLean Blvd.

South Elgin, IL 60177

If you would like to make a donation in person, ask to speak to Jeff Garcia.

If you would like more information on trisomy 18, please visit www.trisomy18.org.
This is a family of six that laughs like you laugh. They play like you and your children play. But this family's burdened with severe medical problems. Their medical bills keep stacking up the longer their children survive. But that pile of debt is overshadowed by what really matters — keeping their kids alive.

The four kids, Steve, 16; Jacob, 9; Nicholas, 3; and Kayli, 5 months, all were born with rare medical problems. Kayli and Jacob may lose their lives to their birth illnesses.

But this is not the crux of the story.

This is about a family prevailing over those odds. When The Courier-News first published their tale, Rob was unemployed and Kelly hadn't worked for some time. Temporary financial relief opened up for Rob shortly after we met and I found myself spending more time with Kelly. I watched her be a champion for her children one day at a time. Uncertainty looming over their young lives.

Steve is allergic to both medications that would have cured Methicillin-resistant Staphylococcus aureus (MRSA), the infection he contracted after having back surgery for degenerative disc disease at age 14.

Almost no medical research exists for Jacobs's esophageal problem. He also exhibits severe ADHD and sensory integration dysfunction, which makes him feel no pain where pain should be felt.

Nicholas' brain tumor has abnormalities new to the medical field.

Young Kayli suffers from a chromosome disorder called trisomy 18. The diagnosis is not highly studied and there is a slim rate of survival — with most victims dying before their first birthday.

Kelly is faced with their medical conditions every day, but she wouldn't change her life for the world. She says she's learned a great deal from her children. The Whistlers' have accepted their role as parents of four children with rare diseases and that's the story I hoped to share.

The storm has calmed for Steve, but it hasn't for Nicolas. The little boy gets tested every three months to monitor the growth of his now stagnant brain tumors. Every day Kayli lives is a blessing. Despite the circus of medical activity surrounding them, they continue to be who they are — kids. When you walk through their front door you see just that — an impromptu chase through the living room, a flash of a smile from behind a pillow and toys scurrying by a coffee table.

I do want to thank our readers who sent the Whistlers compassionate letters and donations when we first published their story. Never underestimate the power of a handwritten note. Those warm prayers were a source of strength for Kelly. And the money helped the family stay out of a homeless shelter, which would have been devastating to Kayli's immune system.

If you have a chance, I urge you to hear Kelly's story firsthand in the audio slide show posted with this story. Sharing this story may help other families faced with these circumstances