-Ivy & Andy Meyer
Reagan received a surgery at Riley at just three months old after being diagnosed with craniosynostosis. Five years later, she is accomplishing so much and loves soccer, singing, dancing, and The Little Mermaid. Reagan loves going to Dance Marathons and even performed during the Talent Show this month at BSUDM at Ball State. Here is Reagan’s story told by her parents:
“Reagan was two months old when her pediatrician recommended we take her to Riley because she didn’t feel as though her head was shaped right. We drove up in December for Dr. Ackerman to take one look at her and say “Oh yeah, she has craniosynostosis.” She put Reagan through a scan for confirmation. At the end of the day we were sent home with the confirmed diagnosis of craniosynostosis. Craniosynostosis is when the platelets in your head fuse together prematurely causing your head to be misshaped. This, too, can cause vision impairments, learning disabilities, severe headaches and lack of room for the brain to grow properly.
February 4th, 2014, at barely 3 months old, Reagan had surgery. Dr. Ackerman had to separate the platelets in her head allowing her brain the proper space needed to grow.
To this day no one would know Reagan ever had a problem. The only things she has to show for it is a slowly enclosing soft spot at the crown of her head and a scar that goes ear to ear.
Since before Reagan was even thought of, Seth and I were in our local Kiwanis chapter who happen to be big supporters of Riley Hospital for Children. Now that we have Reagan and we have all gone through such an experience with Riley, we continue to support Riley and have Reagan joining the ranks with us.
Reagan is very outgoing and, though only 5 years old, she understands she is helping other children when she does Riley events. Aside from being a Riley kid and supporter, Reagan enjoys playing soccer, singing, and dancing. She loves Moana, Doc McStuffins and The Little Mermaid!”
“Breath is the finest gift of nature. Be grateful for this wonderful gift”
Our journey consciously celebrating each successful breath began June 12, 2009. It was our son, McClain’s, due date, yet instead of joyfully welcoming him to this world I was somberly carrying him through Riley Hospital. It was this day that each breath became that much more precious; when he received the diagnosis of cystic fibrosis, a genetic disorder that damages the lungs and digestive system.
The Riley pulmonary clinic staff was outstanding. The diagnosis of CF begins with an enormous amount of information regarding the “new” normal for your child. We jokingly refer to it as “the data dump.” I couldn’t have asked for a more thorough, professional, and compassionate group of people than those in the Riley pulmonary clinic that day. I left that day emotionally drained but confident armed with information and support.
McClain’s first hospital admission was when he was six weeks, his second at three months. We were continually frustrated that while we were following treatment regimes, he still could never get to a baseline of normal breathing. It was shortly after this feeling of helplessness that we were approached for a clinical trial. The gifts that Riley has given children over the years are innumerable. However, I will always sing the praises of the research done at Riley as the most astounding gift Riley has given the world. Children are cared for wonderfully during their stays, but, through research, those stays aren’t as frequent or even necessary in some cases. The research done at Riley, in collaboration with centers around the world, looks toward the best practice treating diseases and, in some instances, a CURE. That is truly something that takes my breath away!
McClain participated in a clinical trial for CF children 6 months-3 years testing the efficacy of inhaled hypertonic saline. For McClain, this trial was a game changer! For the first time since he was born, I went to check on him in his crib and saw him breathing NORMALLY!
McClain is now a VERY active 7- year-old, who, when you see him at PUDM, you would possibly wonder why he would ever be a Riley kid. Our experience over the years at Riley have been nothing but wonderful! He is seen in CF clinic every three months and as of next month it will have been two years since he has been hospitalized! Our biggest news, however, is that he is being evaluated to participate in another clinical trial. This trial is for a new medication that treats CF at the cellular level and is the closest they have gotten to a CURE!! These miracles happen because of the research done at Riley. These are the types of miracles that happen every day at Riley!!
This is our second year with PUDM and when we see the dedication shown by the PUDM volunteers, we see the opportunity for more miracles like this! We, personally, see a cure for our son!! THANK YOU!!
–Lesley & Shawn Stout
Megan Weisenbach was born on March 7th 2000 and the Weisenbach family was blessed with a very special little girl. Megan was diagnosed with Mucopolysaccharidoses (MPS) on July 14th 2004. Megan had MPS III A, also called Sanfilippo. This was a day that turned our world upside down and changed us all as a family. After 14 months of in and out of doctor’s offices and many tests, we were finally given some answers to help us understand Megan’s rare disease. This was the beginning of our journey as a Riley family that started in 2004 and ended in 2012.
MPS is a rare genetic lysosomal storage disease caused by the body’s inability to produce specific enzymes. Normally the body uses enzymes to break down and recycle material in cells. In individuals with MPS, the missing enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. There are many different types and subtypes of MPS. MPS III A is one that is lacking the enzyme Heparin Sulfate. This is a neurological type and the disease progresses over time. The child has mild symptoms early on and then over time loses the ability to eat, talk, and walk and can have many other medical complications.
We were very fortunate to be part of Riley Children’s Hospital. Megan’s disease specialist at Riley was one of only a few in the state that specialized in her disease. MPS III A has no cure and there were no treatment options for her disease. There are currently some trials, but there is very little funding for this rare disease, so research is very limited.
Megan had many different types of symptoms that we followed and treated as they presented. She had eight different specialists that followed her for different symptoms, a neurologist, gastroenterologist, orthopedic specialist, pulmonologist, etc. We spent time in and out of doctor visits. As her disease progressed and in her final few years, we were in and out of Riley Hospital where she was a patient dealing with different medical issues. We were very blessed to have wonderful physicians and nurses who cared for her and our family. Riley truly became a special part of our family. We were comforted by the care and knowing that she was with the best!
We had 12 awesome years with Megan and the family times we had together for birthdays and holidays were the best. Megan was the highlight of the party. She was nonstop energy and loved going around saying “dododododod” and just giggled and made us all laugh. She soon became known as our Doodlebug!
Megan had a passion for life, she was a happy and loving little girl, who got up every day with a smile and never complained about what she was given to deal with. She faced so many aches and pains during her disease and was more courageous than any of us will ever know. Her strength was amazing and she never knew anything other than what she was given to deal with each and every day. She had an unconditional love for everyone she met and knew “no strangers.”
Megan touched so many lives and had a very “special touch.” She loved to hold hands with her family and friends. Her strength and grip was so strong even into her final hours. This was her special way of connecting to others especially when she could no longer talk and tell you how much she loved and cared about others. She had a way of letting you know it would always be OK and we all knew that no matter how bad we really thought things may be, she soon reminded us how lucky we all were and not to take things for granted. She always loved you no matter what!
Megan has inspired and touched so many people in her short 12 years with us. It is hard to believe how much she did accomplish in that short amount of time. We know she was sent to us as a special gift, our guardian angel and now she is up in heaven in a peaceful place. She is running, jumping, singing, and just giggling again. We know when we hear that loud thunder, that she is up there yelling to everyone to “shake your Bootie.” Megan has taught us so many life lessons and how to live each day to the fullest!
Just like the song “For Good,”it says that people come into our lives for a reason, bringing something we must learn, and we are led to those who help us most to grow, if we let them. We help them in return and believe that it is true, but we know we are all who we are today, because we knew you, we have been changed for the good. It will be until we met again, so let us say before we part, so much of me is made from what I learned and loved from you, you’ll be with me like a handprint on my heart!
As the quote from Mother Theresa says: “In this life we cannot do great things, we can only do small things with great love!” This is a great summary of how Megan truly lived her life! Megan has blessed us and inspired us with so many gifts: love, courage, laughter, strength, and faith! While she loved attending and being part of the Riley Dance Marathon’s we know she is smiling down and watching over all of you! We can’t thank you enough for your time and dedication you all give to Riley Dance Marathon. Your gifts to this program are endless and touch so many Riley children and families. We hope sharing our story can help share the impact of how important this event is and how much it means to all of us in the Riley family!
Thank you to Purdue Dance Marathon Team and for being there “For the Kids!”
Tom, Theresa, Kayla, and Abbey Weisenbach
Oliver is the Gilkison’s miracle baby. He was born February 3, 2009. He has surpassed all odds and expectations set before him. Though there were no signs of problems during the pregnancy, Oliver was not breathing upon birth. He was revived, but still suffered from breathing difficulty during his first few weeks of life. While napping, Oliver would stop breathing and turn blue. As the episodes began happening more frequently, Oliver’s pediatrician recommended that he see a pulmonologist at Riley Hospital for Children.
Upon arriving at the pulmonologists door with our stories of “blue” spells and having a few spells in the office the Dr. sent us off for a sleep study. The sleep study was supposed to last a full 3 hours. After 2 hours they stopped the study and admitted us directly into the PICU. Over the next few days we endured a whirlwind of doctors and theories, but the common thread was that Oliver had obstructive apnea. They did a bronchoscope and determined that he had laryngomalacia, and a few days later he had supraglottoplasty. Oliver showed improvement in many ways. However, a week after the supraglottoplasty surgery he had a follow up sleep study, and to our surprise he still had numerous apneas. That was the first time the tracheotomy or trach was mentioned. They did see that he was improving in person even though he was declining on paper, and decided that we could go home for the weekend with the promise to return the following Monday for another sleep study.
We were confident Oliver was making a turn around. We were wrong! His sleep study got worse. Oliver had more obstructions, longer apneas, and higher CO2 levels. Another concern was that he was not hyperventilating despite his elevated CO2 levels. Oliver was immediately admitted, on March 16, 2009, since it appeared that Oliver was asphyxiating himself. The doctors ran several tests to look for causes of the apneas and obstructions other than floppy airway. The geneticists and metabolic doctors told us they didn’t see anything too out of the ordinary, but that they would be watching. Neurology thought that it wasn’t brain related and the pulmonary team thought that it might be a genetic condition called Ondine’s curse. The true problem was that Oliver had serious issues and no proponent to point at. During Oliver’s stay we watched his condition worsen. The rule of thumb is that when a nurse walks fast, you worry; when they run, you panic. He was making the nurses run as he frequently set off his alarms.
After doing one last consultation with all the different departments and exhausting all of our options, we agreed to the tracheostomy. Oliver had his tracheotomy at 1:30pm on April 8th. A few hours after his surgery, he was breathing on his own and feeding normally. Finally, we thought problem solved. This was only the beginning of the next chapter in our story. The next evening after the trach was placed; Andy was at Oliver’s bedside and noticed he wasn’t acting normal. A few minutes later Oliver had a seizure and stopped breathing for 20 minutes. Fortunately, the nurses were able to stabilize him by putting him on the ventilator (April 9, 2009).
This was a major step backwards for us. Oliver let the vent do all the work for about 24 hours until the results of a blood test indicated he was extremely anemic. Oliver received a blood transfusion that gave his breathing a jump-start. However, his breaths were still very shallow and inefficient. The purpose of the ventilator was to give him bigger more efficient breaths, rather than breathing for him as before. A week after the trach Oliver had a follow up sleep study. On the positive side of things, he only had a few brief apneas, which allowed the doctors to rule out central apneas. The study also indicated Oliver still had very high carbon dioxide levels, and was breathing very rapidly and in a shallow manner. As a result of this and the previous events, the doctors told us Oliver would stay on the ventilator for an indeterminate amount of time. Oliver has since been given albuterol, which has brought his carbon dioxide levels down and given him steady strong breaths.
Oliver was sent home on the ventilator after every test came back negative for why Oliver was experiencing breathing troubles. Because they did not have a diagnosis, they could not give us a prognosis. Oliver came off of the vent Christmas of 2009! He had his trach until March of 2010. His stoma had not closed on its own so in the summer of 2011 it was surgically closed. While in surgery to close the stoma they took a muscle biopsy of his thigh. This biopsy confirmed that he had mitochondrial myopathy complex one deficiency (Mito: A neuromuscular disease that is progressive in its degeneration.) This then explained all of his breathing problems, and now his autism but even with this diagnosis we do not know all of what is to come for Oliver’s future. So we move forward blindly only with the knowledge that this is Oli’s journey and lucky are those that can share it with him.
When Cade was around 9ms old he presented with what looked like seizures. As you can imagine we were terrified that he too had an AVM. We were sent to our local hospital and from there given the choice on transporting him to a (closer) Chicago Childrens Hospital (Lurie) or back to Riley. We made no hesitation in choosing Riley. He was transported via critical care ambulance to Riley hospital. Upon our arrival we were met by a team of Drs waiting to rush him to MRI with the same fear we had of a repeat of an AVM just like Zane. They admitted him and we were informed it would be 12-24hrs before he would have his scans. Those were probably among the longest and scariest hours of our lives at that point. When his scans were finally completed we received the news that Cade did NOT have an AVM. Honestly at that point I was only half listening to the rest of the results. I remember hearing Chiari 1 blah blah blah. That’s seriously what my mind was hearing, blah blah blah. I remember thinking as I let out a weird laugh “Chiari? We can handle that!”. Little did I know ….. We were released 2 days later and set to come back for further imaging and an appointment with his neurosurgeon. I was confident that we would have his next sets of imaging done and that would be that we would just follow up yearly and he would never have an issue. I was wrong. Upon completion of his next imaging it was determined that Cade not only had Chirai 1 but he also had Syringomyelia. He would need a sleep study to confirm the degree of his sleep apnea (he had this at birth) and a swallow study to determine if he was aspirating his food/liquid. We scheduled those for the following month. When we got the results of both tests it was found that Cade had severe central sleep apnea and silent aspiration. He would need brain surgery. His first brain surgery was scheduled for Oct 23, 2014. He recovered well from that one and we felt things would finally settle down and life would go on with some degree of normalcy. Ha we should know by now that’s not how things work in our family. In February Cade presented with what appeared to be a pediatric stroke. He lost use of his left side. We again made the trip to Riley to see his neurologist. She immediately had him admitted and at this time we added a few more wonderful Drs to our team. It was determined that Cade has what’s called Alternating Hemiplegia of Childhood. He spent a week inpatient undergoing numerous tests during that time. We were sent home with apnea monitors and to get our affairs in order once more before returning for a 2nd brain surgery for Cade. He underwent his 2nd surgery on March 9th 2015. This recover was much harder than the one before. Now here we are just a couple of years later and it appears he will likely undergo a 3rd surgery within the year. This time to release a tethered cord. Riley is truly a second home to us. As much as I wish it weren’t so I can’t think of another hospital I would rather be at. Truly the staff here is amazing.
Lexi is a 10-year-old spunky, outgoing, athletic, kind-hearted little girl. She is extremely active and loves to play soccer, basketball, tennis and do gymnastics. Lexi is also a huge fan of Harry Potter! Lexi loves to sing, she sings a different Disney song every year at the marathon. Lexi is an extreme animal lover, especially hedgehogs and dogs, and even says she wants to attend Purdue to become a Veterinarian! Lexi doesn’t know a stranger, and while she may try to come off as bashful when she first meets someone new, they are sure to be her new best friend within 5 minutes!!
Lexi talks about her experience and surgery at Riley Hospital for Children frequently, even though she was only 2 years old at the time, and understands how much the staff there helped her, especially Dr. Agostino! Because of this, she has grown a love for paying it forward and even has a lemonade stand & bake sale in the works.
In July of 2010, at 2 years old, Lexi literally woke up one day with a large mass under her chin. After nearly three months of testing without any answers, Lexi’s pediatrician & ear, nose, throat specialist referred her to Dr. Michael Agostino at Riley Hospital for Children. After finally being diagnosed with an unknown bacterial infection, Dr. Agostino and his staff performed life-saving surgery to remove two of Lexi’s lymph nodes and skin, all of which were infected with the bacteria that was taking over Lexi’s tiny body.
Thanks to the staff at Riley, Lexi has been healthy and active for 8 years. Recently, Lexi has had a visit at Riley due to her lymph nodes. Lexi and her mom, Leann, are thankful to have Dr. Agostino working with them again.
Zane was diagnosed at 9ms old with what could be a life threatening AVM. He was referred to Riley Childrens hospital at that time. We were seen by Neurosurgery and told that it was probably just artifact on the scan as this wouldn’t typically present on a CT. At that time he was scheduled for a couple of days later to have an MRI/MRA. Before he was even into recovery (he had general sedation for the scans) Riley hospital had already put together a team of physicians to treat him both at Riley and Methodist. We had no idea what a turn our lives and his would take in those next several days/weeks and no years. That day when we were on our way home to try and get affairs in order and prepare the other kids for what was to come with him he had his first seizure at a speedway in Lafayette. We immediately turned around and went right back to Riley. He was admitted and kept for the next 2 days. We were released to take him home and “love our baby” because when we would return in just 4 short days they could not promise us he would make it through the surgery or what the outcome would be if he did. He has since been followed at Riley for the last 8yrs. We have an amazing team of Drs there who without them we would not have our sweet Z now. They and really all of the staff at Riley have gone above and beyond to make sure that all of our needs both medically (and even emotionally as we navigate this journey) are met. Zanes Neurosurgeon there never gave up on finding out what caused this to happen with him. The normal population only 1% will ever have an AVM. Zane has multiple They are in his liver, lungs, digestive tract and brain. Because of this he suffers from multiple complex and partial seizures as well as asthma and often headaches. He is an amazing little guy who is full of so much love and curiosity. We are fortunate enough thanks to the care at Riley to be able to see a bright future for him. Something at one time we weren’t sure he would have. He will continue to be seen at Riley throughout his lifetime, until a time comes when he moves on to adult specialists. I can honestly say they don’t “dread” going to their appointments there. They know that while sometimes it’s not comfortable all the things they endure the care and team will always be kind and compassionate.