Super Hero Families
We have amazing Super Hero Families that we meet throughout each year at our dinners and events that experience first hand what life is like when you have a sick kiddo. We think these families should be celebrated more, so we are highlighting some of them here.
Thank you for visiting and allowing them to share their journeys with you.
The Parchim Family
We are the Parchim Family, Rob, Amanda, McKinley and Mason. Mason Brian was born June 23, 2010 at 35 weeks gestation. He was a happy, healthy 4 lbs, 15 oz baby boy. Mason spent 9 days in the general nursery for observation and came home on an apnea monitor because of his small size. He continued to grow and meet all of his precious milestones.
October 1, 2010 is the day that we began this special journey as Mason had his first seizure this day. After many seizures, blood tests, EEG’s, cat scans, brain MRI and weeks of back and forth to OSF Children’s Hospital of Illinois in Peoria, IL we had a diagnosis for Mason. He has a right side micro chromosome deletion of 2q24.3-2q31.1 also known as Dravet Syndrome. This deletion causes severe intractable epilepsy and global developmental delay.
The first three years we spent many days and nights in the hospital trying to control the 1000’s of seizures he was experiencing, addressing failure to thrive as the seizures took a toll on his little body, attending countless hours of therapy and many doctors appointments.
Mason has a g-tube for medication and nutrition and he is non-mobile and non-verbal. He works hard each day to improve feeding issues, low muscle tone, vision impairment and many other daily tasks. Mason takes three seizure medications and medication for reflux. He has trouble regulating his body temperature because of the medications. He has had 3 ear tube surgeries, adenoid surgery, bilateral hip surgery and femur repair surgery. Mason does all of this with a smile. He is so happy and strong.
Mason sees seven specialty doctors at three different hospitals throughout Illinois.
At 3 years old, Mason started preschool. It was a hard transition for Mom, as I was the one taking care of him and now I had to put my trust in someone else, but Mason had wonderful people around him and he enjoyed school and all his new therapists. He is now in 2nd grade. He loves being at school and interacting with the kids. Mason loves books, swinging on the playground and having his friends push him around and talk to him.
As a family we have to be strong and work through the rough times. McKinley is the best big sister to her special brother. She never complains when we have to change plans because of complications with Mason. I call our family a “tag team family”. We do our best to be with each child at their time of need. We can’t always be together physically, but always in heart and mind.
Thank you, Mattea’s Joy, for your continued support to our family. We appreciate it!
The Sellers/Peters Family
The Perzee Family
“Where flowers bloom so does hope” ~Lady Bird Johnson We have repeated that quote many times through the years because sometimes the only thing we had has hope. My daughter Amanda has spent a lot of time in the hospital. Amanda has a rare form of Spina Bifida and has undergone 75+ surgeries and countless procedures she remains optimistic and never complains. Everyone who meets Amanda calls her a humble spirit. Amanda along with her two sisters Emily and Alaina, with their mom Tommi and step father Mike together they have seen many trials and tribulations, however this has only strengthened their family bond. Humor, hope and optimism what gets our family through all of the obstacles that are placed in our way.
The Lambert Family
When Megan was 30 weeks along in her pregnancy, the unexpected happened. After going to labor and delivery the night before and being sent home, Megan and her husband Luke headed back to the hospital. While only a half of a mile from the hospital, Megan went into labor before she could make it to the hospital. Luke delivered Karleigh weighing in at 3lb 3oz and rushed to the hospital. After both mother and daughter were stable, Karleigh was transported by helicopter to Comers while Megan was in recovery in Kankakee. After three weeks in Chicago and little to no problems with the baby, they were transferred back to Kankakee where Karleigh stayed there for another two weeks. Karleigh is now seven and is loving life. She is quite the fishing partner for her dad and is now taking martial arts classes.
The Harmon Family
Our Journey with Evelyn
Our daughter, Evelyn Rose Lambert was born on August 4, 2010. Right after birth, we noticed something wasn’t right, we didn’t want to BELIEVE it, but we knew in our hearts, something wasn’t right. In the hospital, we noticed she never cried or fussed and was very jumpy, we expressed our concerns to dr’s, and they said-she’s just a passive baby. While in the hospital, her blood sugar dropped and she went limp in my arms. Immediately, we knew something was wrong. Our long journey, to a place where we never thought we would ever go started immediately after she was born.
After being home, for awhile, we noticed she slept a lot, sometimes 22 hours a day. Evelyn never cried, fussed for any reason. Evelyn never reached any milestones. Around 4 months of age she began to continually jump and that’s when we knew we had to do something. At 6 months Evelyn was having 30-40 seizures a day, we took her to see the neruo-as soon as he saw her, he immediately said-she’s having Myoclonic seizures, and we were dumb founded. This confirmed our worst dreaded fears-seizures, our journey to countless medicines started. Evelyn was immediately put on anit-seizure medicine. Medicine after medicine, and the more we increased her seizure medicine the more seizures she had. Evelyn’s seizures continued to get worse. She would have 300-500 seizures per a day. We felt completely heartbroken, medicine after medicine; we still were unable to control her seizures. Evelyn’s seizure affected our entire life; we were prisoners in our home. She would seize if the TV was on, turning lights on, walking past her and casting a shadow caused seizures. We couldn’t take her anywhere.
As she seized in our arms, we knew she was getting worse, along with seizures; she was diagnosed with bladder reflux, which caused bladder infections, and spiked fevers and more seizures. In Evelyn’s first year of life, she was hospitalized 15 times.
We searched endlessly, scouring the internet for answers. As we researched, we thought we had the answer-ketogenic diet-her neuro agreed to start her on the keto diet. Having to watch your child continually have 500 seizures or more, any parent would be willing to do anything to change their child’s life, even if it means to change the way you feed your child.
Our hopes were shattered, the diet didn’t work. One day, Evelyn had a grand mal seizure-screaming turning blue. Oxygen dropped to 9% -nurse hit the code blue-thought we were losing her. Put her on Deppakote, see her seizures stop.
Our lives have been forever changed because of this long journey that we never expected to be on. We never expected to have a child with special needs, or endure the heartache watching your child seize. We never thought, that we would have a child be in a wheelchair, unable to walk or communicate, or never hear your child say “Mom or Dad”.
We never expected that our family will be forever changed. Each one of has struggled and grieved, cried, begged, and pleaded to heal our daughter Evelyn. Our family has changed because of this journey. We were thrown into this deep dark journey, that we never asked to be in, countless Dr. visits, therapies, IEP meetings, seizure watch when Evelyn gets sick. Medicines given a daily basis, and worrying ever minute.
We have gone through this dark journey and we never thought we would get past this dark journey. But, somehow it just happened, not sure when we started to move on from the dark journey.
-As we reflect, maybe it was instinctive to fight and search answers, just like any parent would, but the truth is- we were in denial. We knew it all a long, but we wouldn’t accept the truth.
-we went through a process of fighting, searching for answers telling ourselves, she’ll be ok-it’s just a temporary thing
-Then we hit rock bottom, retreat from life, family, and friends-they couldn’t relate to our situation. We felt anger, pity, lying on our backs in the bottom of a well.
-Time goes by, yet even through all the pain, pain of your child’s pain and dealing with your own pain.
-We finally realized the truth. We are special needs parents. We have accepted our daughter will never be normal. We had this realization through the early intervention meetings, seeing same age kids playing, IEP meetings, countless dr visits.
-We just finally accepted the truth.
-Then one day, we changed our negative attitudes (why us? Why Evelyn? To a positive attitude how did … we survive, how did we overcome this obstacle.
-As we reflect on the journey, we realize “If you have a situation you finally come to terms with we found ourselves asking, “What have we learned?”
-We now can reflect and realize what we have learned and how we have changed going through the dark journey.
-We have learned the definition of the word “friend” and who are real ones are and who actually support us.
-We have learned not to judge ,”that guy moping through the store might really be having the worst day of his life” or seeing another family pulling out a wheelchair or a child having trouble walking-somehow, through this dark journey, our eyes have been more opened and loving and accepting of others around us.
-we have learned the true meaning of unconditional love
-we have learned to teach our other kiddos to not judge and look beyond the person.
-we have learned to stay positive, sometimes we still hurt and its difficult to see your spouse sad, but we somehow have learned to move on. Not sure how it happened, but now we want to have a family, embrace the difference and move on. We have decided it’s our choice to move forward. We stay positive by spreading awareness to others about Evelyn’s seizures and being an ambassador for purple day.
I’ve noticed when out in public, the curious stares of the ignorant, but also I’ve noticed those who are, or have been, in our shoes. Embrace those moments, share stories, realize you are not alone. Take comfort when comfort is offered. We are all human, at least I think so, and so are all our children. We want all of them to be loved and accepted.
We have learned to take life’s smaller moments at a time, instead of milestones, we celebrate inch stones. Many people do not understand how we can have so much joy and happiness over tiny little things, like Evelyn, who is 7 and trying to sit up on her own. All these tiny moments of joy and happiness add up to us staying positive.
As I end this, I have a quote that sums up, how Mike and I feel through our dark journey
“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you or allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.”
The Regnier Family
Our next Super Hero family we'd like to celebrate is the Harmon Family. Their two sweet girls introduced them to the world of the NICU and their optimism and courage is inspiring. Here is their journey in their own words:
We are the parents of two awesome little girls. Our Emma Claire was born at 25 weeks gestation due to a placental abruption. She weighed 1 lb 8 oz and was 12 ½ inches in length. She spent three and a half months in the NICU where she endured more than we could have ever imagined: from brain bleeds, extreme premature lungs, cardiac issues, kidney complications and a variety of other medical hurdles. With the help of the amazing medical staff and her feisty spirit she fought her way out of the hospital to join us at home. Emma was followed by several medical specialists and required multiple therapies, numerous times a week for the first three years of her life. Emma continued with therapy to support her low tone, fine motor and gross motor skills until recently. Emma is an overall healthy eight year old. She loves Harry Potter, animals and enjoys playing basketball and softball.
Emma’s little sister, Finley Kate joined our family two and a half years later. Finley was also born premature but at 33 weeks gestation. Joy began having subtle contractions and it was highly recommended that she deliver early. This time it was a quiet, planned c-section and less stressful. Finley was in the NICU for three and a half weeks. Our little Finley has also spent many hours of her life with amazing therapists to improve her speech/language and also support her motor skills. She is now five and a half years old. Finley has the biggest heart, loves to dance, and enjoys playing with her big sister.
Our parenthood journey has been full of surprises, some tough times and wonderful celebrations. In our family we love hard, continue to stay optimistic and remind our girls to Do their Best and Be their Best. Emma and Finley have taught us the importance of giving to others and to be grateful for each and every day we get to spend with our loved ones. Our experiences have brought many wonderful people into our lives. Through all of this we have gained a greater understanding for the medical world and the trials and triumphs MANY families endure on a daily basis. We often say; It isn’t always easy, but it is ALWAYS worth it.
Joy and Aaron Harmon
The Miller Family
Our Son, Chance was born with Hirschsprung’s disease. The ganglion cells did not form properly in his intestine & he could not pass stool. He was flown to Comers at 2 days old & had a pull thru surgery at 6 days old. The late Dr Lui removed 5/8 of his colon. We have chosen to homeschool him, due to his inability to control his bowel movements. He is otherwise a healthy & active almost 8 year old boy, who does everything he possibly can to keep up with his 7 older siblings. Nothing prepares you for a sickly newborn. The thoughts of him not making it those first few days & the worry we have every day about infections is sometimes overwhelming to think about & process. However, unlike most other children with HD, Chance has never been readmitted to the hospital, no infections, & no other surgeries. We are forever grateful to his surgeon & blessed to have this amazing little boy complete our blended family. Not only was the chances of HD 1 in 5000, but he was also a vasectomy baby which is a 1 in 2000 Chance. Nothing seemed to be a better choice for his name.
The Miller Family
Madisyn was born 1 lb 5 oz at 25 weeks secondary to a rare life-threatening pregnancy phenomenon called HELLP syndrome. During HELLP syndrome, pregnant women are affected by the destruction of their red blood cells, low platelets, and elevated liver enzymes. If left untreated it can be life threatening to both mom and baby. I was air lifted to University of Chicago from Kankakee, IL. We were started on a magnesium IV drip and steroids to help speed up development of Madi’s lungs as she would need to be delivered soon after last dose. After last dose of steroid, in front of family in our OB patient room, I apparently went unresponsive and was taken emergently to the OR for an emergency C Section even though that was an extreme risk because my platelets were in the 20’s. We were told later from a medical professional that was in the OR that my blood pressure was 240/120 and they were ruling out a brain bleed. Madi coded after delivery and needed 8 minutes of compressions and was taken immediately to NICU after they intubated her to maintain a patent airway. Once in the NICU she received an Arterial line to monitor blood pressure and she was started on IV fluids. After a couple days I was extubated and informed of the turn of events as I had no knowledge. The first enormous blessing we received was that I had no residual deficits from the HELLP syndrome. Madi’s NICU stay was 104 days in length and included ups and downs. We had scares which included respiratory failure requiring 39 days on a ventilator, PFO, left kidney hydronephrosis, bilateral hernia, sepsis scares, necrotizing enterocolitis scares, presumed blood clots within her heart, and many reintubations due to Miss Madi pulling out her breathing tube. We had rejoices which included accepting the bottle near the end of our NICU stay and steady growth. Madi came home at 5 lbs with oxygen, apnea monitor, pulse oximeter monitoring. After nearly two months of being home Madi began to show signs of extreme respiratory decline which also affected her development and growth. She was admitted to the PICU at University of Chicago and underwent emergency surgery to remove the subglottic cysts which were blocking 90% of her airway. After nearly two weeks we were discharged with oxygen, apnea monitor, pulse oximeter, and feeding tubes. Madi was Hospitalized several times for RSV since leaving the NICU. She has struggled with developmental delays which is expected for her prematurity. At two years old, we were told she most likely has Apraxia of Speech and started receiving aggressive speech therapy in the home. At 3 years old Madi started school to help with her developmental delays. She underwent tonsillectomy, adenoidectomy, and ear tubes in October of 2017 and we were told she does have 35% of subglottic stenosis, meaning she has a narrowed airway most likely from all of her intubations. In January of this year her cardiologist told us her PFO has closed on its own and that the fatty tissue within her heart was gone. We feel we are so fortunate for the blessing we were provided.
The Fierce Family
On November 19, 2015 I was 23 weeks pregnant with our 4thchild, when my water broke unexpectedly. I had no history of preterm labor, and so I didn’t really think anything was wrong. We made (what I expected to be) a quick trip to St. Mary’s labor & delivery, and soon learned that I was leaking amniotic fluid and our baby was in serious danger of being born way too early. I was transferred via ambulance (with my Mom) to University of Chicago, while my husband Sean went home to gather up some things and explain what was happening, to our other 3 children (at the time, Arlene was almost 7, Wes 4 and Macy 2). We had an amazing support system from the moment I went to U of C- family and close friends who stepped right in and took over for us (as a stay at home mom, we were left to figure out how to take care of 3 kids while my husband worked and spent time with me a U of C).
At St. Mary’s, Sean was given a purple envelope, which I later learned was a care package from Mattea’s Joy. It was a ray of hope/help on a dark day, when Sean was just trying to hold it all together on his own!
I remained on bed rest @ U of C, essentially just trying to stay pregnant as long as possible. Those days were scary and very difficult physically, but we had an absolutely amazing support system and strongly believed that God held the plans for our family. Our family was really there each step of the way, and we will never forget it! Just after midnight on December 4th(also our oldest daughter’s birthday), I went into a fast & furious labor; and went for an emergency c section without any family there. I had never had surgery before so it was terrifying. I was put under general anesthesia and Connor Michael was born at 2:20am, weighing 1 lb 8 ounces. Sean arrived while I was in recovery, and my parents and sisters followed shortly after. My sisters sat with Connor during his first hours of life, as I had a bad recovery experience coming out of surgery and Sean couldn’t leave me. It was both a joyful and terrifying day all at once. A few days later, I was discharged and returned home after 3 long weeks. Leaving our son in the NICU at Comer was absolutely the worst thing I had experienced up until that point. My surgical recovery was very unpleasant and then leaving with empty arms really pushed me into an emotional meltdown. But we had kids at home who needed their mom! And so we spent the next 2 weeks going back and forth from Bourbonnais to Comer, spending time with Connor and getting to know his nurses; pumping milk, doing kangaroo care, and just generally waiting for him to grow. Connor initially did remarkably well for a preemie- he tolerated the vent well and doctors were decreasing his vent settings in his 2ndweek of life, and he was gaining weight, tolerating feedings. And then, when he was just shy of 2 weeks old, Connor had a ‘quiet’ spell, where nurses felt like he was may be getting an infection of some sort, because he wasn’t moving as much and just didn’t seem himself. We spent a terrifying night in the NICU on December 15th, where we had some tense moments and all of our prayer warriors at home were praying for a miracle. He turned a corner that night and seemed to be doing well, so we breathed a sigh of relief. That night was surreal; it hit me that we were concerned about our child dying. Up until that point, I had focused on staying positive and didn’t let my mind go there. We spent the next 36 hours trying to catch up on rest and come down from the anxiety filled night when we almost lost him. And then on December 17th, I got the morning report from the NICU staff and they said Connor was stable and seemed to be on the upswing. That was the 1stday I stayed home (different family and friends had been taking turns driving me to the NICU and watching the other kids, so Sean could go back to work). Sean headed to the hospital after work and called me shortly after he arrived to say that Connor still seemed pretty sick, but that I should stay home. About an hour later, my sisters arrived; after getting an update from the doctors he decided they needed to bring me down. My parents met us there and a dear friend held down the fort at home. Shortly after I arrived, the doctors became very concerned about Connor and told us that they got test results from infectious disease, he had a staph infection, and all we could do was watch and wait. Over the next few hours, we prayed, held him and waited to see what would happen. By early evening it was clear that he was couldn’t fight anymore and we felt that we couldn’t subject him to any further treatment. After having him baptized, we told him it was OK to let go, and he died in my arms at 7:18pm, on December 17. It was the worst moment of our lives, walking out of Comer with empty arms again. Telling our other children the next day that their brother had passed was so difficult. Each day of his life, Connor had many visitors-both family and friends, so he was never alone. I cherish that memory-the fact that he touched so many in his short time on Earth, and so many went out of their way to spend time with him. I could never ever thank those special people enough, for doing what I couldn’t do (spend every waking moment in the NICU).
2 years later, I’m not sure we’re ‘healed’, or that we ever will be. I constantly feel that someone is missing from our family. Our story is rare and so there are many questions that will never be answered. Our children and extended family talk about Connor often, so we feel like his memory is alive and well. As a Mom, I’m overjoyed to know I’ll see him again, but I also live with daily reminders of what should have been, and that is heartbreaking. With a huge amount of support from family & friends, we are moving on. There are blessings that came from that horrible time, and I count them often. The idea that our children are not ‘ours’ was a tough one to learn, but it made us stronger parents. We believe that God has a plan for our family.
Volunteering with Mattea’s Joy has been a delight for us, as it’s a tangible way to give back, in honor of all those who supported us. We can’t think of a better way to honor Connor’s life, than serving others.