Myles- 2 FPIES
In terms that are easy for the general public to understand, what exactly is the medical condition?
Myles has a condition that causes him to have a severe reaction to grains. ( tho the condition can cause reactions to any food Myles has only triggered to grains)The reaction it’s self comes from the proteins inside of the food. The reaction does not occur until 2-4 hours after ingestion, because it has to reach the intestinal tract to cause the reaction. Unlike most food allergies there is no cure only food avoidance, there also is no treatments for the reaction only time to let the reaction pass. Unfortunately this condition could be deadly for some children due to the severity of it symptoms.
At what age were they diagnosed/how did you know there was an issue?
We have our final diagnosis at around 9 months old, the symptoms were awful, he would profusely vomit for hours, has well as turn a odd color of grayish blue and be terribly lethargic as well.( amongst other symptoms)Thank the heavens we had a friend who’s son had this condition and had mentioned to us that it may be the cause of Myles’s reactions!
Number of surgeries/procedures/medications?
Thankfully Myles has never had to take any medications or endure any procedures.
How has it affected your child's life?
Myles‘s life has been affected in many ways, as he cannot play with certain things that most children can because they are made with grains surprisingly, as well as he can never leave the home without food made from mom and dad, since he hast to have complete avoidance, he cannot eat at regular restaurants or food prepared by someone else unless we know every ingredient in the entire meal. He’s never been able to go trick-or-treating like a normal child, because most candies have grains in them every holiday that includes candy does get a little harder each year, and as he gets older, it’s harder for him to understand that he cannot have the else has. he has never been able to go to daycare, for the fact that there’s so many possible ways for him to come in contact with grains , so he stays home with his mommy! We know that this has set him back in ways, such as not being as social around other children, and taking a little longer to talk, since he had no one, as far as children to push him to want to do older kid activities!
What's the one thing your child or you wishes people understood about it?
Luckily, since Myles is so young still, he doesn’t really understand that he has this allergy. But I’m sure when he sees other people with the food he can’t have it could be quite upsetting for him on why he cannot have it.
In what ways has your child shown strength/perseverance/defined the odds?
Most children with this condition can have failure to thrive as an infant and not gain much weight at all for the simple fact that the food itself has to be cut completely out of the diet. Myles has been very lucky, and has defied the odds, and has grown to be a very perfectly healthy actually on the larger side two year old! He’s still enjoys so many foods and has not let this affect him when he does not get to have what everyone else does. He still enjoys playing with other children, as well as going out to the restaurants with mom and dad!
Explain to me your child's personality? What do you love about them?
Myles is a bubbly and energetic silly little guy! Full of love, and sass, as he is learning to talk! He loves to be a big brother to his little sister, Emma. He loves to show her all the things he knows and help Mommy take care of her during the day! There’s far too many things to tell you about all the reasons we love him, the biggest one is his heart, though he is the sweetest little boy and is so caring and thrives to learn more every day! He definitely melts anyone’s heart that meets him!
What are some hobbies your child enjoys?
Myles loves to play any games that includes balls! ( baseball, basketball, soccer)The loves to play outside and hangout with his friends! He is very much a tinker and will sit and focus on the littlest tasks!
Anything else you would like to add?
Myles is very lucky that he will most likely grow out of his allergies by the time he is 6yrs . The only way we will know is by a food challenge when he gets older, but we are excited for the future! We hope one day Myles can eat all the pizza and pasta, his heart could dream of, as well as any cookie or candy his heart desires! He may not have grains in his life at the current moment but he has never let that affect him, and absolutely loves food no matter what Mommy makes him though he’s not a huge fan of some! He will normally always try something new!
Liam- 7 Williams Syndrome
In terms that are easy for the general public to understand, what exactly is the medical condition?
Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS occurs equally in males and females and in all cultures worldwide.
At what age were they diagnosed/how did you know there was an issue?
Age 2. I knew when he was born something was different. He cried all the time and feeding was very difficult. He had many medical problems as a baby. At one point we saw 6 specialists. Global developmental delays. Genetic testing diagnosed him with Williams syndrome.
Number of surgeries/procedures/medications?
2 eye surgeries, 1 hernia repair surgery, endoscope
How has it affected your child's life?
Liam will always be developmentally behind his peers. His vision issues make things challenging. He has to adapt to his environment. Liam sometimes gets anxiety with certain tasks because he is unsure of himself and if he will fall or get hurt in the process.
What's the one thing your child or you wishes people understood about it?
I wish people understood how much Liam loves people! He has to say hello and talk to everyone because he truely wants to talk to them, look them in the face. He has brought a smile to so many peoples lives just by acknowledging them. Most people are welcoming to this but some are not and explaining that to him has been difficult for him to understand.
In what ways has your child shown strength/perseverance/defined the odds?
Liam has been in therapy (pt, ot, speech) since he was 6 months old. It gets difficult to have to go every week. Sometimes the therapies make him do hard things and push him. He has made huge progress from therapy. The work was worth it.
Explain to me your child's personality? What do you love about them?
Liam is always happy. He thrives on positivity. I love how he cares for everyone, even people he doesn’t know. Liam brings light to my day. He tells me to smile when I am not. He tells me and his family constantly how much he loves them. He loves music. He loves it so much that he cries at sad songs. Liam doesn’t waste a waking moment without showing love towards someone.
What are some hobbies your child enjoys?
He loves riding bikes, swimming, jumping on the trampoline, and seeing lawncare tools like lawnmowers.
Anything else you would like to add?
Liams genetic condition is very rare and not many people know about it. A doctor may see one patient in his whole career with Williams syndrome. It is not as common as say, Downs Syndrome. Therefore research lacks. The Williams Syndrome Association works to bridge this gap to make sure research is being done to drive doctor’s medical decision making and treatment planning. Donating to this association is imperative to the future of these children with WS.
Jaxon- 5 Spastic Hemiplegia Of The Left Side
In terms that are easy for the general public to understand, what exactly is the medical condition?
Limited to no motor skills on left side of body due to a stroke in utero
At what age were they diagnosed/how did you know there was an issue?
1.5 Years Old & noticed he wasn’t using his left hand for anything & motor skills were behind
Number of surgeries/procedures/medications?
1 major surgery replacing tendons in his left hand & multiple botox injection procedures. Occupational and Physical therapy once a week. Casting therapy on both arms and legs. Along with prosthesis fittings for his leg brace.
How has it affected your child's life?
Physically limited on what he can and can’t do. Trouble keeping up with other kids at times & after long days can have trouble or pain when walking . He’s behind in some area where physically he would be able to do if not for the diagnosis.
What's the one thing your child or you wishes people understood about it?
That though he may be limited in ways, he’s just like any other kid his age who just wants to be a kid, play and have fun.
In what ways has your child shown strength/perseverance/defined the odds?
We were told when he was first diagnosed that he may not walk and or need a walker his whole life. He not only walks but runs without any assistance besides a leg brace.
Explain to me your child's personality? What do you love about them?
My child’s personality is shy when you first meet him or are around him. Then he warms up and turns into a big goofball who loves Jesus with his whole heart. I love that he doesn’t see himself differently than any other kid & that he loves Jesus.
What are some hobbies your child enjoys?
Playing WWE with dad, camping with pappy and mimi, swimming, and loves watching youtube.
Weston-6 Eosinophilic Esophagitis
In terms that are easy for the general public to understand, what exactly is the medical condition?
It's inflammation of the esophagus (the tube connecting the mouth to the stomach), caused by eosinophils. Certain foods usually trigger the eosinophils, but unlike a normal food allergy you can't test to figure out the foods. Scopes and biopsies along with trial and error need to be done.
At what age were they diagnosed/how did you know there was an issue?
1.5 Years Old. He had a chronic cough that wouldn't go away.
Number of surgeries/procedures/medications?
He has had multiple scopes, a procedure to fix a laryngal cleft, and has had a feeding tube. He takes one medication currently.
How has it affected your child's life?
When he was on an elimination diet and couldn't eat any main allergens, that was really hard. We switched to medication to try to give him a more normal life. It affects his eating, sometimes he chokes because food gets stuck in his throat and he is small for his age. Other than that he doesn't really let it affect him too much.
What's the one thing your child or you wishes people understood about it?
"That thing that goes up your nose hurts." I believe he was talking about his scopes or feeding tube.
In what ways has your child shown strength/perseverance/defined the odds?
He's always had a giant smile on his face. He has woken from anesthesia with an instant smile. No kid had ever had a nasal scope at his hospital before the age of 6 because they won't cooperate. We didn't want him under anesthesia all the time so we talked them into trying. He's the youngest kid at Rainbow to ever cooperate and handle it being done nasally. (4 years). I've asked his doctor if he would ever be healed of eoe and he told me no and if so he would have to write about him in medical studies. We told him to start writing because we stand on the fact that he will define the odds and be healed.
Explain to me your child's personality? What do you love about them?
Weston is just Weston. He marches to the beat of his own drum, is full of life, radiates giant smiles, tells silly jokes constantly, and is ornery. But he is so full of love, he cares so much about others. He is always worried when people are sick or sad. He has everyone pray whenever an ambulance goes by. He loves Jesus so much and has such wisdom for his age.
What are some hobbies your child enjoys?
Building with legos, swimming, spending time with family and friends, playing soccer.
Anything else you would like to add?
We all should strive to have his joyful outlook on life.
Anthony- 10 Wilms Cancer
At what age were they diagnosed/how did you know there was an issue?
8 and relapsed end of last year
How has it affected your child's life?
He rolled with the punches nothing gets him down.Although I now he misses being around his friends and school.
What's the one thing your child or you wishes people understood about it?
That he's a normal child.
In what ways has your child shown strength/perseverance/defined the odds?
No matter what he stays strong and works himself hard
EXPLAIN TO ME YOUR CHILD'S PERSONALITY? WHAT DO YOU LOVE ABOUT THEM?
Stubborn and he gets what he wants .He will go far.
WHAT ARE SOME HOBBIES YOUR CHILD ENJOYS?
Being outside riding his 4 wheeler and mowing
Number of surgeries/procedures/medications?
He has had two major surgeries and 6 minor surgeries.
Anything else you would like to add?
Hes a super hero
Maddox- 8 Asthma
In terms that are easy for the general public to understand, what exactly is the medical condition?
Maddox has asthma which causes inflammation and narrowing of the airways that results in difficulty breathing, coughing, and sometimes wheezing.
At what age were they diagnosed/how did you know there was an issue?
Maddox was diagnosed at 2.5 when he was hospitalized because of croup.
Number of surgeries/procedures/medications?
Thankfully no surgeries or procedures, but has taken countless rounds of oral steroids during asthma flare ups and use controller steroid inhalers daily to keep his symptoms under control. Sometimes epinephrine through a breathing treatment is needed to stop bad asthma attacks.
How has it affected your child's life?
He gets sick easier and stays sick longer than most kids who do not have asthma. He has pulmonary appointments every 3-6 months to monitor his condition.
What's the one thing your child or you wishes people understood about it?
“If you don’t do treatments you could get really sick.”
In what ways has your child shown strength/perseverance/defined the odds?
Maddox is so good about taking his daily medications and have learned to independently use his inhaler. He understands his lungs need extra support to function correctly and rarely complain.
Explain to me your child's personality? What do you love about them?
Maddox is very active and determined. He has a curious nature and is so intelligent. He is quiet in group settings, but really comes out of this shell once he is comfortable. He is funny and such an amazing kid!
What are some hobbies your child enjoys?
reading, chess, soccer, swimming, being outside
Anything else you would like to add?
He inspires me with how well he handles his chronic illness and I’m so proud I get to be his mom!
Lenna- 2 Portal Thrombosis
At what age were they diagnosed/how did you know there was an issue?
At 2 years and 2 weeks old, she became lethargic and had abnormal stools. After 9 days in the hospital that included a series of bloodwork, transfusions, ultrasounds, endoscopies, an MRI, venogram, and paracentesis, we received our diagnosis and plan of care.
Number of surgeries/procedures/medications?
In just the initial hospital stay, she had 5 procedures to get her stable enough to bring home.
How has it affected your child's life?
Every little issue, i.e. lack of appetite, abnormal diapers, fussiness, poor sleeping patterns, stomach bugs, fevers, etc. makes us RUN back to the hospital to ensure it's not liver related. Also, as her parents we try to limit any pressure put on her belly, which includes tumbling around with her brothers.
What's the one thing your child or you wishes people understood about it?
It's so hard to answer "How is she doing?" Because she can be acting so great but we don't have any idea what's happening inside of her, or how quickly she is swelling on the inside.
In what ways has your child shown strength/perseverance/defined the odds?
Her body has already created little veins to bypass the portal vein (which is why we didn't discover there was a problem until now. )They are struggling to keep up, as she is growing, but, nonetheless her body created those little veins so we believe a new portal vein will be created as well!
EXPLAIN TO ME YOUR CHILD'S PERSONALITY? WHAT DO YOU LOVE ABOUT THEM?
She is so helpful and caring and sweet and silly. She takes care of everyone in our home. If someone loses something, she will find it. If someone needs to get dressed, she will try to help. If someone cries or gets hurt, she is the first to ask "Otay?" While rubbing their arm or face. She has the best laugh/giggle and is so happy!
What are some hobbies your child enjoys?
She loves baby dolls. And chickens. She likes to pretend the chickens are baby dolls. She could also swing ALL day long.
Anything else you would like to add?
She is the whole family's "Princess."
Kellen- 13 Spina Bifida
In terms that are easy for the general public to understand, what exactly is the medical condition?
Spina Bifida occurs when the spinal column does not fully close. This happens very early in pregnancy. There are different levels depending on where the hole is located. Kellan’s is considered sacral, which means his hole is very low on the spine. Each child is different and is affected differently by the Spina Bifida.
At what age were they diagnosed/how did you know there was an issue?
I was 5 months pregnant when it was found on an ultrasound.
Number of surgeries/procedures/medications?
5 surgeries/too many procedures to count/takes medication to control bladder pressure/uses catheters to assist with bladder health/uses a Peristeen to assist with gastric issues
How has it affected your child's life?
We have worked hard to not let it! Kellan is extremely active and has always been encouraged to try whatever he wants! As he has gotten older, his differences have impacted him and how he feels about himself. However, he does not let it slow him down!
What's the one thing your child or you wishes people understood about it?
He deserves the same opportunities as everyone else and his accomplishments should be celebrated like everyone else’s! When he earns something, it’s not just for giving it a try, it’s because he too has put in the work!
In what ways has your child shown strength/perseverance/defined the odds?
He doesn’t let any of his limitations prevent from trying new things or just participating in every day life!
Explain to me your child's personality? What do you love about them?
He is smart, kind, and funny. Kellan loves to learn and isn’t afraid to work hard. He likes to be right and hates to make mistakes. He is extremely crafty and loves a good project. He is loyal and compassionate and would do anything for anyone.
What are some hobbies your child enjoys?
Crafting, coffee making, sports, music
Anything else you would like to add?
He is our hero! Kellan defies the odds every day and watching him is the privilege of our lives!
Ryker- 6 ADHD (attention deficit/hyperactivity disorder) & ODD (oppositional defiance disorder)
In terms that are easy for the general public to understand, what exactly is the medical condition?
He has very compulsive behavior, inability to focus/pay attention, difficulty following directions or rules, easily frustrated & overstimulated, throws tantrums & can have raging anger.
At what age were they diagnosed/how did you know there was an issue?
He was diagnosed at 5 years old. We knew there was an issue because he was so easily angered and threw tantrums/had rage over what seemed to be minor things. He would throw anything he could grab, he would knock over furniture on his way to his room & then completely strip the bedding off his bed and throw that all over his room, he would hit his brothers, scream at the top of his lungs until he just exhausted himself.
Number of surgeries/procedures/medications?
1 medication
How has it affected your child's life?
It has affected his life because he makes friends very easily and he loves being around other kids, however, it can be difficult to manage friendships when these behaviors are happening. Especially if they don't understand his diagnoses & that his brain just works a little differently than other people. He can come off as rude & ungrateful, and that simply isn't the case.
What's the one thing your child or you wishes people understood about it?
That he isn't a "bad or mean kid," and more often than not, he is acting before his brain has had a chance to process what is happening around him.
In what ways has your child shown strength/perseverance/defined the odds?
He has learned ways to calm himself when he is feeling unregulated - the biggest one for him is listening to music while swinging. He has come so far with his behaviors & we're just so proud of how hard he works to improve himself.
Explain to me your child's personality? What do you love about them?
He is so energetic and full of life. He isn't afraid to try new things & he loves to be friends with everybody. As much as he is energetic, he is also so gentle and nurturing - he loves playing with dogs & babies/toddlers.
What are some hobbies your child enjoys?
Playing football, playing with his toy soldiers, learning about the military/wars, playing Minecraft, drawing & listening to music.
Granger- 8 Food allergy (peanuts)
In terms that are easy for the general public to understand, what exactly is the medical condition?
It's an immune system reaction that occurs after eating or coming in contact with certain foods. Some people are more severe than others and it can be life threatening.
At what age were they diagnosed/how did you know there was an issue?
He was 9 months old. His eye swelled up and I brought him to the doctor. They said it was pink eye but I made them do allergy testing. It came back positive so we got an epi pen. Thankfully we did because 3 weeks later he had an anaphylactic reaction from cross contamination and the epi pen saved his life.
Number of surgeries/procedures/medications?
He always carries an epi pen. He has gone through oral immunotherapy and graduated so he takes 8 peanuts a day to help reduce reactions. We see peanuts as medicine to him.
How has it affected your child's life?
It has affected his life in that before OIT he couldn't go out to eat or eat food that we didn't know how it was made. After OIT he has to take 8 peanuts after eating and be calm for 2 hours after or it can cause a reaction. We are very careful in trying to keep him healthy because if he has an illness he cannot take his dosing, as his immune system is down and that can cause a reaction. It has caused some anxiety because of all the scary experiences he has gone through.
What's the one thing your child or you wishes people understood about it?
"I wish people knew that not everyone can be around peanut butter or peanuts and you shouldn't eat it by people that are allergic."
In what ways has your child shown strength/perseverance/defined the odds?
He has had a lot of reactions. I believe he's needed an epi pen 6 times, which is an emergency situation. Times after reactions he is the one comforting me and telling me he is okay and that Jesus is protecting him. He then turns around and shows perseverance taking his dosing and fighting for his healing.
Explain to me your child's personality? What do you love about them?
He is so sweet. He is one of those kids that will see someone left out and be friends with that person. He has a huge heart for Jesus and is not afraid to tell people about him. He is a complete goofball and always on the go. Granger needs to know "what's next" at all times, resting is not for him. He wants to travel the world when he's older and tell everyone about Jesus.
What are some hobbies your child enjoys?
He loves being outside, building with legos, soccer, baseball, playing in the creek, riding go carts, and building things.
Anything else you would like to add?
He has taught me so much about faith and he inspires me.
Harper- 8 Dravet Syndrome with the SCN1A mutation. Autism
In terms that are easy for the general public to understand, what exactly is the medical condition?
A catastrophic seizure disorder
At what age were they diagnosed/how did you know there was an issue?
First seizures at 3.5 months, second at 4.5 months. Diagnosed with epilepsy at 4.5 months. Genetic testing at 9 months, results at one year for the SCN1A mutation. Dravet diagnosed at 16 months. Autism at six years old.
Number of surgeries/procedures/medications?
Currently on three seizure medications, no surgeries, no procedures related to diagnosis.
How has it affected your child's life?
She is unable to be outside under 50 degrees or over 75 degrees for an extended period. She has seizures anytime. She is unable to be in a pool. She can not sleep alone. She is cognitively delayed. She receives speech, occupational, and physical therapy. We have adaptive equipment for times when she is unable to sit up or walk.
What's the one thing your child or you wishes people understood about it?
She loves Jesus and is always happy. She loves meeting new people.
In what ways has your child shown strength/perseverance/defined the odds?
The amount of seizures she has had should have taken her life or she should be a vegetable and instead she walks, talks, and eats. A proven miracle!
Explain to me your child's personality? What do you love about them?
She’s always happy, she loves repetition for learning, she social, she truly cares about people when they are sad, she’s determined to do things on her own, she’s a strong girl.
What are some hobbies your child enjoys?
Baking with mom and grandma
Creating art
Playing with a water table
Watering plants
Anything else you would like to add?
It’s far from an easy life but she truly lives everyday happy and excited.
Gianna- 6 Asthma
In terms that are easy for the general public to understand, what exactly is the medical condition?
Gianna has asthma which causes inflammation and narrowing of the airways that results in difficulty breathing, coughing, and sometimes wheezing.
At what age were they diagnosed/how did you know there was an issue?
Gianna was 5.5 months when she began showing symptoms while sick with a cold and 7 months when diagnosed.
Number of surgeries/procedures/medications?
Thankfully no surgeries or procedures, but has taken countless rounds of oral steroids during asthma flare ups and use controller steroid inhalers daily to keep her symptoms under control. Sometimes epinephrine through a breathing treatment is needed to stop bad asthma attacks.
How has it affected your child's life?
Gianna gets sick easier and stay sick longer than most kids who do not have asthma. She has pulmonary appointments every 3-6 months to monitor their condition.
What's the one thing your child or you wishes people understood about it?
“That you need to do your inhaler when you’re asked to.”
In what ways has your child shown strength/perseverance/defined the odds?
She's so good about taking her daily medications and have learned to independently use her inhalers. She understands her lungs need extra support to function correctly and rarely complain.
Explain to me your child's personality? What do you love about them?
Gianna is compassionate and has such a gentle and kind spirit. She is very creative and artistic. She is quiet in group settings, but really comes out of her shell once she is comfortable. She is funny and such an amazing kid!
What are some hobbies your child enjoys?
dance, soccer, drawing/doing crafts, cooking & baking
Anything else you would like to add?
She inspires me with how well she handles her chronic illness and I’m so proud I get to be her mom!
Haylie- 16 Type 1 Diabetes
In terms that are easy for the general public to understand, what exactly is the medical condition?
The bodies inability to produce natural insulin in the pancreas creating a need for daily injections and glucose monitoring
At what age were they diagnosed/how did you know there was an issue?
8 months
Number of surgeries/procedures/medications?
2 types of insulin
How has it affected your child's life?
It’s created self confidence problems which have resulted in depression.
What's the one thing your child or you wishes people understood about it?
That I can have what everyone else can have I just have to take extra time to check my sugar and take insulin. It’s hard when everyone else can just eat whatever they want but I can’t.
In what ways has your child shown strength/perseverance/defined the odds?
She has compassion for others more so than most children her age. She is 16 and has no signs of long term effects due to keeping her diabetes somewhat under decent control.
Explain to me your child's personality? What do you love about them?
She’s vibrant. She sees the world in a deeper perspective. She’s emotionally attached and finds herself caring more than others. I love that she feels deeply about those around her. Especially people she doesn’t even know.
What are some hobbies your child enjoys?
Horse Back Riding. Crocheting and reading. She has recently taken an interest in theatre.
