articles

Do Something GREAT and Support These Local Child Warriors!

September 18, 2014
In honor of Macaroni Kid's "Do Something Great Day" this week, we are highlighting local children who are struggling with various medical conditions. This is an opportunity for our Macaroni Kid readers to do something GREAT and take the time to read about these courageous children in our community. You can choose to do something even GREATER by donating personally or to the organizations that they have recommended.
kidscollage.jpg
Aria and Isabelle: Cystic Fibrosis is a genetic, life-threatening disease that affects the lungs and digestive system of about 30,000 kids and adults in the United States. People with CF have a defective gene that causes their mucus to be thicker and stickier, which clogs the lungs and causes fatal lung infections and stops the pancreas from digesting vital nutrients for the body.

Our daughter Aria (2 years old) tested positive for CF when she was 8 days old through the Newborn Screening. We were told to get all three of our kids tested. Our son Sawyer (5 years old) tested negative, but Isabelle (8 years old) was positive. Finding out that two of your babies have a life-threatening disease in a couple of months is devastating, but our girls are brave, positive and resilient - they are truly little heroes.

We knew nothing about CF until one phone call, but in the past two years we have learned a lot! Exercise and eating a healthy high-calorie, high-fat diet is important, and CF patients lose a lot of salt so they are prone to dehydration. CF patients are not contagious to people without CF, but they can spread dangerous bacteria to each other, so at events they are not allowed to be around each other.

The girls do treatments twice a day that include nebulizers and inhalers. Aria also does "pounds" (manual manipulations) 45+ minutes on 8 different parts of her body, and Isabelle uses an airway clearance vest which squeezes and shakes here for 20 minutes in the morning and at night. Both of these treatments keep the mucus from settling in the girl's lungs and causing infections.
Isabelle and Aria are amazing little girls who are not going to let CF keep them from doing anything in this life! Please join us in our fight to find a cure HERE.

Praying for Evelyn: Born at 35 weeks, doctors had no concerns about our daughter, and said that Evelyn was perfectly healthy. However, at two weeks old she became extremely irritable and continued to be without the aid of medication. After a procedure to explore if acid reflux was the issue, at two months old she stopped eating and had a feeding tube inserted into her stomach. From three months until present we have visited multiple hospitals and doctors to explore what causes her degenerative neurological state. She has had the most extensive workup any of her doctors have ever seen. She suffers from six different types of seizures, and has been diagnosed with infantile spasms, severe developmental delay (at 22 months she is developmentally at a newborn level), sensory processing disorder, brain degeneration, cortical blindness, and a form of early epileptic encephalopathy that doctors have never seen before. She also has a mutated UBA5 gene - there has never been a documented case before.

Evelyn is currently on several types of seizure medications, and we have tried alternative therapies as well - acupuncture, cranial sacral therapy, handle therapy, SimplyHealed, chiropractic care, and Doterra essential oils. We are constantly searching for something besides medicine to make her comfortable and hopefully stop her brain from atrophying. We are continuing all types of physical and mental therapy to hopefully allow her to progress as much as possible, and she has already done many things that her doctors never expected that she would ever do.

There are still continual ups and downs, including an almost 3-week stay in intensive care recently where we almost lost her, but she has rallied hard and is ready to come home! All of this, and her Daddy has just come back from active duty military deployment. 

To follow Evelyn's story please visit her Facebook page HERE. We have benefitted ftrom the Ronald McDonald House, so we encourage you to support this great organization.

Jude - Cancer Warrior: On Monday, Oct 14, 2013 Jude celebrated his 18 month birthday as a happy, healthy and normal little boy. On Wednesday he had his regular well check with his pediatrician. Due to some slight bruising on Jude's legs, which we had attributed to being a very active and playful toddler, we were sent to get bloodwork just to be sure everything was okay. Later that afternoon, we received a call that is every parent's worst nightmare - the doctor told us that Jude has leukemia and told us to report ASAP to the hospital where we would be directly admitted. It's still unfathomable to believe how our active, healthy and strong boy could have cancer. We signed a huge stack of forms consenting to treatment and learning about the potential side effects - from learning disabilities, heart problems, seizures, and even death. Within 48 hours Jude already had his first surgery (of dozens) and had begun chemotherapy.

Nearly a year later Jude is now approaching two and a half and is a happy, silly boy who is wise beyond his years. He wrapped up the more intense portion of his chemotherapy earlier this summer and is now undergoing a home-based oral chemotherapy regimen with monthly clinic visits. This maintenance phase will last until 2017. Aside from hair that is just starting to grow back, you wouldn’t be able to tell everything that he has and will continue to endure.
Learn more about Jude, Childhood Cancer, and ways to help HERE. Provide support through Jude's CaringBridge page

Nova's Story: When our daughter began to have psychiatric problems (OCD, violent rages, tics, irrational fears, etc.) at the age of 7 she was placed on drugs and sent to therapy. In spite of these efforts she continued to get worse until she ended up as a patient in a mental hospital at the age of 8 years old. We were devastated and thought she would never have a normal life. She had extreme irrational fears about being touched or any of her clothing or possessions being touched. She would have loud vocal tics when she heard the sound of my, or her father's voice. She would fly into violent rages where she would lash out physically and verbally at us. It got to the point where she could no longer attend school or go to family functions. The once popular and social little girl had become a recluse, confined to her room because of extreme fears and violent tics. 

One night her father came across a web page (http://pandasnetwork.org/pandas/) that listed every one of our daughter's symptoms and linked them with a disease called P.A.N.D.A.S., an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, a neurological disease in which certain children exhibit a rapid onset of obsessive­ compulsive disorder (OCD) and/or tic disorder symptoms following strep infections. Convinced that our daughter was suffering from P.A.N.D.A.S. we immediately started seeking a doctor who could diagnose and treat her for this crippling disease that causes the body's own antibodies to attack the basal ganglia of the brain, causing it to swell. We were met with resistance, as much of the medical community still did not know about or believe in the viability of this condition. But now we had a name for our daughter's suffering and were on a mission.

Knowing that insurance would not likely pay for the treatment of a controversial diagnosis, we set up a fund raiser to pay for specialists and treatment. Through the generosity of many caring people, God's grace and knowledgeable doctors, our daughter made significant progress. She returned to social activities, and once again we could wrap our arms around our daughter and hold her close, something we couldn't do for over two years.

Unfortunately some of Nova's symptoms are starting to return, and it's possible she will need another IVIG treatment. We have reopened her fund account for her ongoing medical care. Please visit her fund page HERE.

Trinity's Heart: Our daughter was born with Hypo-plastic Left heart syndrome. Basically this means she has only 1/2 of a heart. Trinity has undergone 3 open heart surgeries and countless other procedures to simply be alive today. Trinity has had a rough couple of years, having now only 1 functioning lung, pulmonary hypertension, and pulmonary AVM's.

We are blessed to have her here with us everyday and we thank God for allowing us to have her on borrowed time. Trinity is now being evaluated for a heart transplant, which we as a family are finding to be more difficult than any other journey we have ever been on. Having a sick child does many things to a person's psyche. But the one thing we are most thankful for, is that it has taught us humility and the importance of taking each day as it comes, and trying our best to live it with her to the fullest potential it can possibly have. 
Please visit Trinity's Facebook page HERE. Donations can be made HERE.

Editor's Note: Thank you to the parents of these beautiful and courageous children for sharing their stories.