Maddie is an 11-year-old who attends Driscoll Elementary School from Dayton, Ohio
Brandi adopted her daughter, Madison, and her two brothers in 2017. At the time, Maddie was diagnosed with a developmental disorder. In 2019, Brandi received her devastating diagnosis of MPS IIIC (also called Sanfilippo Syndrome). Sanfilippo Syndrome is a very rare genetic disorder with no treatment or cure. It's a progressive disease often compared to Alzheimer's for children, with a lifespan ranging 10 -20 years, depending on the type. Maddie's type generally progresses slower, with a lifespan of around 20 years old.
With all Sanfilippo children, every day is different, depending on how severe Maddie's symptoms are that day. Some days Maddie wakes up smiling and cheerful. Other days she wakes up in pain, barely able to walk. One consistent in Maddie's life is that she must have 24/7 line of sight supervision. She can never be left alone for even a few seconds as she has less cognitive and reasoning ability than an 18-month-old. As you can imagine, this makes life challenging for Brandi and her 5 other children.
While Maddie is currently still mobile, her mobility is slowing down. Just like most children with challenging circumstances, she has good and bad days. Her verbal expression has decreased significantly, and she often resorts to simply clapping to try to communicate what she wants/needs. Eventually, Maddie will completely lose the ability to walk, speak, eat on her own, and potentially breathe on her own.
While Maddie's diagnosis is devastating, her family makes the most out of life, providing Maddie with as many opportunities they can for her continued growth.
Maddie presents a lot of unique challenges and behaviors that are off-putting to many people. In fact, it's impossible to find a nurse for Maddie because of her challenges. As a result of these challenges, she and the rest of the family are very socially isolated.
After adopting Maddie, Brandi lost her consulting business due to the unexpected requirement of 24/7 line of sight care. Since then, Brandi has started a side craft business, which she operates from home.
Becoming an angel would mean so much to Maddie and her family. It could allow them an opportunity to provide more adventure and create more lasting memories for their family OR, maybe even help Maddie get a service dog!
Clark Chance is an 11-year-old 4th grader that attends Greensburg Elementary School, from Milan, Indiana
Clark has a twin sister, Gracie. He was born butt breach and has been flying backward ever since. Clark has 3 older brothers. His mom has raised him mostly as a single mother until a couple of years ago. Clark has had 5-6 surgeries. His life expectancy was 2 years old. There isn't a lot of research on lissencephaly. He just recently had his first noticeable seizure and takes meds daily for them.
Clark loves music. He is mostly in a wheelchair. Clark has therapy at school and weekly out of school. He lives with his mom, her boyfriend Linty, brother Colt and his sister Gracie.
Clark goes to school daily and he is in an inclusion classroom. He is mostly in a wheelchair and uses a walker to walk to his special classes.
Clark takes meds daily through a G-tube. His mom has worked extremely hard to get him to eat by mouth. Clark is non-verbal and people who first met him might not understand some of the gestures or the special vocabulary he has made for himself. Clark needs an aide while at school for safety.
At home, he loves to watch Cocomelon or Wheel of Fortune. Clark absolutely loves going bye-bye and listening to 80's music super loud. Clark likes to be on a schedule. Clark loves to eat everything in sight.
No matter what the circumstances or difficulty of Clark's day, he faces each day with a smile. His laugh is contagious. Everyone that meets Clark instantly falls in love with him. Recently Clark had double hip surgery, he has rocked his recovery and made it through like a champ. Clark is a superhero and an inspiration to all.
Izzy is a 4-year-old from North Bend, Ohio
On March 30, 2017, Korbin and Izabela Cox “Izzy” were born! Izzy was born with a giant omphalocele and immediately transported to Cincinnati Children’s Hospital.
An omphalocele is a rare birth defect that occurs in 1 in 4,000 — 7,000 live births. It is a type of abdominal wall defect in which the bowel, liver, and other abdominal organs protrude out of the abdomen and into the base of the umbilical cord. Surgical repair is performed primarily in stages, or after a period of waiting which can last several months. Izzy has had one stage of Repair at 1 year old with a surgical mesh. She may require additional repairs as she grows.
Izzy continues to fight and is determined to recover from her omphalocele. During the month of April 2017, Izzy was placed on a ventilator for the first time. Izzy fought hard and was able to be weaned off the vent during
May 2017. Izzy seemed to be making good progress, so much so that we had a discharge date of June 28, 2017. Izzy suffered a respiratory setback and had to be intubated, and placed back on the ventilator. Again she fought back and we were able to wean her from the vent. She again showed some progress and while we weren’t moving towards discharge, we had our precious girl on the path to healing.
On August 20th, we were sure Izzy was no longer progressing and seemed to be getting worse. In true Izzy fashion, she continued to fight, however, she was starting to be overcome by what was impacting her (pulmonary hypertension). Again, she had to be intubated. This time on much more aggressive vent settings and by September 10th we had to face a reality that we might not get to bring our girl home. Over the next few days, we had some tough end-of-life conversations. However, with the support of Izzy’s care team, she was treated with aggressive vent settings and placed in a medically induced coma to control her pulmonary hypertension. She began to show progress, again! Izzy received a tracheotomy in late October 2017, and Izzy was slowly weaned off of sedation.
Izabela continued to progress with her medication and therapy and was discharged 6 months later after 403 days and celebrating her first birthday at Cincinnati Children’s Hospital. Izabela Continues to show resilience and was decannulated after 3 years, however, her Pulmonary Hypertension continues to put pressure on her heart. As a result Izabela requires 24-hour Monitoring for Oxygen saturation and Heart Rate and remains on several medications to reduce the work of her heart.
In January of 2021 Izabela received an Echocardiogram and EKG that showed she now has a Dilated Aortic Root. As such her Medical team has decided to put her through a battery of tests to determine what the pressures in her heart are, and evaluate her lungs to see if they are continuing to develop.
A normal day for Izabela requires waking up early to take her first dose of medications that are given every 8 hours to dilate her blood vessels in her lungs, relieving pressure from her heart. She then must be monitored for signs of respiratory distress, oxygen saturations, and heart rate during the day. Depending on her Oxygen saturations, she may require oxygen in order to maintain a normal range.
Although Izabela looks like a “Typical” child, and attends Preschool, she faces daily struggles. Izabela’s respiratory rate and heart rate are much higher than normal and she tires much faster than her peers. When Izabela is doing any physical activity or walks for a period of time, she often asks to be carried because she is tired and exhausted. The heat and humidity impact her tremendously. One of the most heartbreaking challenges she has to overcome is that her Twin brother loves to be active and outside, but during the summer Izzy can only tolerate short 10-15 minute time periods because of the heat and humidity. Izabela is on constant oxygen at night as she sleeps, and continuous monitors to track her oxygen, heart rate, and respiratory status. Mom or Dad must monitor her as she sleeps to ensure proper oxygen levels. Izabela is on a medication known to cause liver failure, and as such is required to have routine blood draws to monitor her Hepatic profile, and blood counts. Because of her respiratory status, she also requires frequent surgeries to look at her heart and lungs. In 2020 Izabela had 6 surgeries related to her ongoing battle with Pulmonary Hypertension, and Chronic Lung Disease, and has had 1 surgery with 1 more already scheduled for Feb 2021.
Izabela has been through so much. She continues to have such a positive spirit. Izzy understands that she has been through a lot, but she always remains positive. During 2020 everything changed, Izzy was no longer able to have mom and dad with her when she was put to sleep for surgery. She had to endure six surgeries without anyone present who she knew. Izzy each time just wanted to know that Mom and Dad were going to be there when she woke up and that Bubby was with MeeMaw. This is typical of Izzy, she is always worried about others before her.
She deserves to be surprised and recognized for her strength and resilience. She loves a good party, it was not uncommon for her to wake up at 2 am at the hospital right before going home and want to play music, and dance. We joke that she has enough sass for everyone, but that spirit shines so brightly. Anyone who is around Izzy for more than 5 minutes is guaranteed a laugh. Izabela has this way with her and will light up a room as soon as she walks in. Her personality and spunk is one for the books, from her fashion choice to her commentary and wit she is sure to make you smile.
Addison is a 6-year-old from West Chester, OH
Addison was born 12/28/15 at 5 weeks premature and transferred to the CICU at Cincinnati Children's Hospital. Addison had her first open-heart surgery at just 9 days old. This was to place a shunt to allow blood flow to her organs and extremities. Addison has multiple heart defects. Her ventricles are switched, a hole between her ventricles call a VSD, pulmonary atresia, pulmonary artery did not form, her aorta is in the spot, and her right and left branch arteries have stenosis. Due to all of this Addison had multiple procedures.
Her second open heart surgery happened at 9-1/2 months old. She had numerous complications after this open heart surgery and her heart developed a complete heart block requiring a pacemaker. She developed a staph infection and came home on a pic line with two antibiotics. After this open heart, Addison went into heart failure needing a new pacemaker to help with heart function.
Addison also needed a third open-heart surgery at 2 years old to repair baffles from her second open-heart surgery.
Addison's first two years of life we were trying everything to avoid a heart transplant. Currently, her heart is maintaining and we have been able to push off a transplant.
Here is a list of surgeries:
1) 3 open heart surgeries requiring bypass
2) 3 chest washout procedures after her second 2nd OHS
3) 2 pacemaker surgeries
5) G-tube placement
From the two heart procedures, Addison has overcome so much. She has trouble keeping with kids her own age and tires very quickly needing breaks. Eating and gaining weight have been a constant struggle because of how hard her heart works. Due to her heart condition, we were not able to send Addison to regular school. We had to keep her away from illness as much as possible. Addison has to be very careful with activities due to her pacemaker.
Addison has overcome and come so far in her five years of life. Addison will have to constantly overcome obstacles due to her health. She has dogged a heart transplant for now, but each visit can be a different outcome. Eventually, it will be inevitable, but we just don't know when. Even with all of this, Addison has so much spunk and a constant smile.
Mary Grace Stratton is a wonderful little nine-year-old girl with Muscular Dystrophy. This means her bones grow faster than her muscles can catch up with, so she’s slowly losing the ability to walk. Her three older sisters all carry the gene as well, but Mary was the unfortunate one who got the actual disease. She is such a resilient young woman, and she never lets her disease get in her way when she wants something. She has one of the best senses of humor and can make anyone smile with just a simple hello. She’s such a sweetheart and she’s the light of her family’s life.
Mary can’t walk, so she uses a powered wheelchair to get around. She needs help with most things people can do without even thinking about. She needs help getting out of bed, she needs help bathing, she needs help to get into her chair, she needs help going to the bathroom, and lately her muscles have been deteriorating so quickly lately that she’s lost the ability to walk at all for longer than maybe a minute. She takes the wheelchair to school, and she is faced with challenges there as well, not being able to participate in things like gym class, or recess, or needing to use the elevator to get everywhere she needs to be.
Mary should be an angel this year because she deserves it. She’s been through so much in her short life and I’ve never met another kid more worthy of the title than this. Her losing her ability to walk, while they knew it was coming, just didn’t know when has made life a lot harder for her and her family recently. She’s taken it all in strides though and she always has a smile on her face. She’s kind and compassionate in the face of adversity and she lived with this disease better than any adult I know would. She’s such a good kid, who never deserved this. I just want something good for them right now, and I know the Stratton family would be beyond thankful if we could make this happen for them. She has a strong determination and independence despite her disability.
Mary Grace ALWAYS has a smile on her face. You cannot help when you see her smile as well. She is a tough girl and never gives up. I love that she is a Jacket Cheerleader, she totally rocks it! I know that she will be the child that kicks MD's butt!
Gavin was born and raised in Northern Kentucky. He is 15 years old and has a younger brother named Cameron and an older sister named Kayli. Gavin is now an uncle to 6-month-old Ryder and he is the proudest uncle ever! Gavin is the most polite, genuine, loving, giving & caring human being I've ever known. He is always so worried about everyone else and how they feel, if someones need something etc. He absolutely has a heart of gold. Gavin has not let DIPG defeat him. He is fighting strong and has so much faith. Since Gavin's diagnosis, he has earned an honorary Florence police badge and was also training at the fire dept up until recently. He has so many goals and he says nothing will stop him, not even brain cancer. Hands down the coolest 15-year-old ever.
Gavin wakes up and tries to do some schoolwork, takes his medicine and he normally gets a bad headache and or leg pain and his stomach pain/ nausea/ vomiting. I will try to get him to eat as much as possible, but he usually will have a protein shake and a fruit until late afternoon. Gavin has trouble getting up and down the steps by himself so I will help him up and down throughout the day to keep him strong and in charge of his body.
Gavin has fought so hard to not let this disease defeat him. He is the most selfless person I've ever met. Gavin has been nothing but optimistic, completely open-minded, and more courageous than any 15-year-old boy should ever have to be. Struggling with only what he wants to do next to in some way help the world, Gavin is never about Gavin! Gavin is a child who deserves everything and expects nothing. An angel to his brother, sister, mom, and stepdad no matter what, but we think he is just the angel you're looking for. Words can't tell you the person he is only an introduction would suffice. Thank you so much for taking the time God Bless All you angels.
UPDATE: Gavin gained his angel wings on July 16, 2021, after his 2-year fight with DIPG.
Our friend Mindy W. is hosting a Pampered Chef Party to benefit Oser- Roth & Friends Fest.
You’re invited to another Oser Roth Pampered Chef virtual party featuring an ALL-NEW CATALOG and 100% of the proceeds will support the Oser Roth organization.
Exciting news - Pampered Chef has changed shipping, and all orders ship out immediately after you place them. No more waiting for the show to end!!
The show ends on August 30, 2021!
Please support ORFF and get some great kitchen gear! Christmas is coming!