Over the years, we have had a chance to hear how Children's Miracle Network Hospitals has impacted families who need help. The children, parents and families that we've met inspire our drive and passion. Each one of them has a story worth sharing.
Carter was born completely healthy, happy and ready to take on the world at a fast pace. He began walking around furniture at six months and could walk on his own at nine months. Carter got his one year vaccines and within a week he could no longer walk, crawl or sit-up unsupported. His eyes began to twitch from side to side and roll back in his head. Something was very wrong.
It was a terrifying time, it took six weeks to receive an accurate diagnosis, all the while Carter was declining. Carter was diagnosed with a rare neurological auto immune disorder called Opsoclonus-Myoclonus Syndrome, a 1 in 10,000,000 disorder. With the disorder, his immune system recognizes his brain as a virus.
This began the hunt for a specialist, we found one in Springfield, Ill. This required a 10 hour car trip with a screaming twitching child. When we arrived Carter was given an exam and a spinal tap to determine how ‘sick’ he was.
The Dr. recommended Carter get a porta cath, have three rounds of chemo, start on monthly IV infusions and be given daily steroid shots. They also wanted a full body scan done to look for a cancerous tumor, gratefully Carter didn’t have one. We were told that Carter would be on the steroids for at least a year and to expect him to possibly relapse. Carter has had several relapses.
Carter is now six and a half. He’s had around 10 spinal taps, undergone many MRI’s, MIBG scans and a new porta cath. Carter’s treatment also required two trips a year to see the specialist. Carter is still on steroids, just a different kind. He still receives his IV treatments every six weeks instead of four.
Because of Carter’s inability successfully wean off his medications he is now labeled a ‘Chronic/Residual’ kid. Meaning, he is in a much smaller category with a smaller group of OMS kids. The next part of Carter’s adventure is unknown. It’s hard enough to find an OMS Dr, it’s even harder to find one that specializes in Chronic/Residual kids.
Chance was born at only 28 weeks gestation (12 weeks premature) and his doctors estimate he stopped developing at 26 weeks. He weighed 1 pound, 15 ounces and was only 13 inches long. When he was born he wasn’t given to his mom to hold, cuddle or even see. He was taken immediately and handed to a team of specialists with the primary goal to get him to breathe.
During his three month stay in the NICU, his mom was told he very likely would be mentally retarded, physically deformed, blind and deaf. He would have no use of his arms, have brain bleeds, Chronic lung disease, blood transfusions, high blood pressure, kidney issues and heart defects. Chance proved to be a fighter and beat most of these odds.
Today Chance is a happy and a pretty healthy six-year-old little boy. He overcame many of his early medical problems and proves over-and-over again that having a huge will to live, the strength of a little super hero and lots of love can do wonders.
He has been diagnosed with Static Encephalopathy and PVL, which are both fancy terms for brain damage due to lack of blood and oxygen to his brain at birth. He is now deals with significant developmental delays at this point in his journey. He receives weekly occupational, physical, and hippo-therapy services, funded by Children’s Miracle Network Hospitals.
Denae had a tumor removed from her brain stem and radiation to her brain and spine. Radiation, in some cases, causes continual damage for years after treatment.
She also received numerous rounds of chemo therapy, some of which can cause damage to hearing and cognitive ability. At Denae’s IEP meeting when she was in the 5th grade, they said she was no longer making progress at school. I blamed it on the radiation.
Denae’s audiologist recommended trying hearing aids as Denae has significant high pitch loss and background noise is an issue. CMN purchased hearing aids for her and the school district provided an FM system which put the teachers voice right in Denae’s ear. Within weeks, her grades went from D’s and F’s to A’s and B’s!
After Denae’s brain surgery she was unable to walk, lost her speech, and ability to read and do math. We spent nine months doing outpatient speech and physical and occupational therapy. We did this twice a day everyday, driving to and from Via Christi St. Francis hospital and saw little progress. A friend of mine recommended us looking into Bal-a-vis-x.
We went to visit and decided to give it a try. I asked CMN to help cover the cost, to which they agreed and we started in December 2010. When we started Denae was unable to walk without assistance.
My personal goal for her was to ride her bike again with training wheels by the summer. In March of that year, my husband took Denae to the school parking lot and she rode her bike, all by herself, without training wheels!
THANK YOU CMN!!
On Dec. 8, 2003, a beautiful baby boy was brought into this world at a total heavy weight of 4 lbs. 4 oz. That was a full-term pregnancy for twenty-four year old mother, Courtney Carpenter. Devin is this angel’s name. Devin was in Via Christ – St. Joseph NICU from Dec. 8-31.
When Devin was about four or five days old I was brought into a room with a Doctor and the charge nurse to tell me my son had been diagnosed with what they think is CHARGE syndrome. They said he is deaf, blind, appears to have some heart issues, blocked atresia in his nose, will probably need a feeding tube, will probably never eat on his own, walk on his own, talk, and they listed off other things they didn’t think he would do and would never be able to do.
I looked at a clock on the wall and I never saw the time move. It was just stayed the same and the strange part was I could not understand what they were saying any more. The time was blurry so I couldn’t see the numbers any more- it was just a white background with the black hands.
I could not run out of that room fast enough ,remember I just had a c-section. I went to my room and cried and cried. I remember my amazing mom and aunt came to see myself and Devin and I couldn’t get out what was wrong.
They both hugged me and said it will be ok we will get through this. When Devin was about four months old we went to see a genetics counselor and Devin was diagnosed with Mosiac Trisomy 22. This is very very close to CHARGE but he has the extra 22 Chromosome. What Devin has is coloboma of the eye, anophthalmos (missing eye), blocked atresia, ASD of the heart, deaf, blind, one ear is smaller than the other, undecended testes, small kidneys and is smaller in stature.
My mom and my aunt were right, we have gotten through this. Devin is now 10 years old and is a 4th grader. Devin has overcome more obstacles in his life than the average adult will ever have to overcome. At the age of five, Devin has had three sets of tubes, two surgeries on his testes and open heart surgery. Devin is able to walk on his own, uses ASL sign language to communicate and has a full time interpreter with him all day long.
Devin has always been able to eat on his own with no feeding tube. He does, however, struggle with daily tasks that most people take for granted. But he does it and when he does it is a huge accomplishment for our family. Devin is very social, loves people, and loves to play baseball with his Miracle League team. Devin is an angel and is truly a miracle. Children’s Miracle Network Hospitals at Via Christi Health has been such a blessing to our family by providing items that Devin needs.
Our daughter Elizabeth Wright is 13 years old. She is an amazing and beautiful young lady. When people meet her they are drawn in by her beautiful smile and happy nature. Elizabeth loves to tell stories; her stories. She is an avid reader, loves horses and was born with Cerebral Palsy.
Her diagnosis is not what defines her. When she was first diagnosed, around 18 months, we were confused and worried. We had no idea what to expect. How were we going to afford all of the extra expenses and what would those expenses be? What would her life be like?
When she needed medical supplies insurance doesn’t cover, we called Children’s Miracle Network for help. They have always been there for us. No one wants to ask for help, but when we call Children’s Miracle Network they always make us feel comfortable asking.
CMN paid for special shoes to fit over her leg braces making it easier for Elizabeth to walk. They paid for the materials for a ramp to be built up to our front door, giving her independence. They bought us a car seat after one of her many surgeries so we could take her home. None of this would have been paid for by insurance, increasing family expenses.
All these things helped Elizabeth meet a goal we set for her when we were in those early, very scary, days of learning what Cerebral Palsy is and how it would affect her. Our goal for Elizabeth is for her to be a healthy, happy and independent woman when she grows up. Not having to worry about how much things cost allows us to focus on the things she needs to do to accomplish that goal. She is now a typical teenager in middle school, working hard to meet all her academic goals. She is now on her feet using a walker, running, laughing and smiling with her friends.
Thank you for supporting this wonderful organization, Children’s Miracle Network, so Elizabeth and other children like her can meet goals set for them.
Gregg and Sandy Wright
Gabrielle is an adorable four-year-old girl. She was diagnosed with retinoblastoma (eye cancer) as an infant. Upon diagnosis, her parents were scared and overwhelmed. They just prayed she would be OK. At eight months, the cancer came back in her left eye and she had to remove that eye. Children’s Miracle Network was there to help with the expenses for traveling to see the specialist who took care of Gabrielle.
Today, she is four and cancer free! She continues to go to the doctor to get checked, but she is beating the cancer and is doing well.
Our beautiful baby boy, Joel Reese Nichols, was born Oct. 8, 2009 at Hays Medical Center. Once the bad weather lifted he was life watched to Wichita, Kan. to repair a blockage in his upper GI tract. The surgery was a success and Joel was able to return home with his family two weeks later.
Joel has Down syndrome and is perfect in every way. Joel has been through a lot in just his two short years of life, but for a stranger to meet him you would never know. He always has a smile on his face and is eager to meet and play with anyone he sees. He is your typical two-year-old toddler currently walking, running and getting into anything and everything he can get his hands on.
At eight months Joel was diagnosed with AML. AML is the most severe type of Leukemia. He received six rounds of chemotherapy at Children’s Mercy Hospital in Kansas City, Mo. Each round consisted of approximately four weeks in the hospital. He was then able to return home for one week before returning to the hospital to start the next round of chemo. It was a long road for Joel and our family but, we made it through. He is in remission.
Joel is physically developmentally on target for a child his age. Many times children hospitalized for long periods of time and children with Down syndrome are physically delayed due to low muscle tone. This is not the case for Joel. He has been physically developmentally on target since birth, however, Joel’s speech is delayed. He receives speech therapy three times a week and we have taught him sign language to help him communicate.
During an appointment with Joel’s speech therapist it was brought to our attention that using an iPad with Joel could help build his communication skills. His Speech Therapist sent a request to Children’s Miracle Network requesting assistance in purchasing the device. The iPad has been a wonderful learning tool for Joel. It is amazing the amount of knowledge Joel has but is unable to communicate verbally.
The iPad has numerous applications for children with special communication needs. There is one particular application we have downloaded on the iPad that Joel loves. The application has three pictures of farm animals. A voice will say, “What animal makes a mooing sound, etc.,” then it will moo. Joel is able to pick out most of the animals and their sounds. We greatly appreciate Children’s Miracle Network for their generous donation.
The Tyson Family
Sophie, Will and Seth were all born with bilateral hearing loss. Sophie got her first set of hearing aids at the age of 2, and the boys got theirs at 6 weeks old. Because our kids are all so close in age (about 1.5 years between each), we would’ve been purchasing 3 sets of hearing aids within a period of 2 years. This would’ve been a huge financial burden for our family. God abundantly blessed us through Children’s Miracle Network, as CMN purchased each of our children’s first sets of hearing aids.
We are so thankful for those little hearing aids that have allowed our three children to hear the beauty of the world around them, as well as, develop speech and language. They also all three share a deep love for music, singing and dancing, and can even stay right on tune! Thank you, Children’s Miracle Network!