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

“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 Perzee 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 Lambert 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 Harmon 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 Regnier 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.