We decided that we wanted to have more children so knowing that having biological children would not be an option for us we decided to adopt another child. Kristopher’s birth mother drank, smoked and did not have good nutrition during her pregnancy which caused Kristopher to be born 3 weeks premature and have several medical issues like an overall muscle weakness, vision problems and he was diagnosed with fetal alcohol syndrome. Kristopher spent 11 days in the NICU because the doctors were afraid that he would not survive. We had to feed him 2 to 3 ounces at a time several times a day just to keep enough food in his system to help him thrive. We had him evaluated at 6 months old and found that he was not hitting the milestones that he should be. They enrolled him in First Steps where he had physical, developmental, occupational and speech therapy every week. He still has physical and developmental therapy through the school that he attends.
I was a pretty healthy kid up until my early teens. Shortly before my 14th birthday I noticed my ankles were slightly swollen. Within days they were extremely swollen and my eyes were starting to swell. I went to my family doctor who ran lab work that indicated my kidneys were not working correctly and he sent my family and I straight to Riley.
We had my first appointment with the nephrology (kidney) team at Riley and they scheduled a kidney biopsy, which revealed I had an autoimmune kidney disease. Autoimmune means my body was attacking itself and in order to treat it I had to take medicines to suppress my immune system.
I was started on high dose steroids but, unfortunately, my disease was very difficult to treat and I had to have several months of daily chemotherapy as well and was on immunosuppressant medications for years. The medications I took had many side effects and I developed glaucoma, diabetes, and nerve and muscle damage. I was implanted with a spinal cord stimulator (a battery in my lower back connected to electrodes that go inside my spine. The battery sends electrical current along my spinal cord to help “turn off” the nerve pain) to help manage chronic pain caused by chemotherapy.
I missed an entire school year and was frequently absent from school. I had many hospitalizations at Riley throughout my treatment. My doctor at Riley was incredible and, despite having ongoing complications of my illness and it’s treatment, I have been in a remission from my illness for several years and have gone on to have an incredible life and do things I never thought would be possible, like graduate from college, travel internationally, and become a foster parent. I am forever grateful for the care I received and will always be a “Riley kid” first and foremost.
I graduated from IUPUI with a Bachelors and Masters degree in Social Work. I recently started a new job with Big Brothers Big Sisters of Central Indiana. I also recently began fostering a 2 year old little boy. I have a younger sister, Katie, who attends Purdue and is involved with PUDM.
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 Hospital for Children. 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 University Dance Marathon and for being there “For the Kids!”
Tom, Theresa, Kayla, and Abbey Weisenbach
Ryan was diagnosed with (ALL) Acute Lymphoblastic Leukemia
when he was 5 on April 7, 2008. This is his story.
Ryan was a typical 5 year old. He was in kindergarten and had his first T-ball practice on Wed April 2nd, 2008. He just didn’t seem as excited as we had expected. He didn’t keep up with the other kids. It was cold and we thought he was maybe coming down with something. Sure enough that Friday he came home from school with a fever and seemed to us to have the stomach flu. Ryan spent the weekend throwing up and feeling normal flu like symptoms; fever, body aches and weakness. Monday the 7th I stayed home from work to take him to the clinic because he was looking a little dehydrated and complaining that the backs of his knees were hurting to the point he didn’t want to walk. We got to the clinic and they took one look at him and said to take him to the emergency room because he probably needed IV fluids. Nothing I haven’t been thru before so off we went to the ER.
As they were asking me questions I had remembered a few weeks back he had complained of a headache so they sent us off for a CAT scan just to check it out. While there I had been asked by two nurses if I wanted to call someone to be here with me, which I didn’t think anything of at the time but looking back they must have already known I was in for a huge spiral downward! By the time we had gotten back from the scan there were 2 doctors and a nurse holding a box of tissue waiting for us and I knew something was up. At that point I just wanted to run the other way.
They sat me down and again asked if there was anyone they could call and that there was an ambulance on the way to take us to Riley because the preliminary tests shows Ryan possibly had Leukemia! That was something no parent could have ever prepared themselves for, to hear those word “Your Child Has Cancer.” His status from that point continued to spiral downward. He tested positive for a strep infection so they started IV antibiotics, and his Hemoglobin was extremely low, so they also started a blood transfusion. While in the ambulance on the way to Riley, he got a nose bleed that wouldn’t stop because he had little to no platelets and a head to toe rash that after days in isolation they figured it out to be septic emboli, which meant the infection was so bad it was seeping out through his pores causing little blisters all over his body, he was one very sick little boy.
Treatment for this type of leukemia for a boy at the time he was diagnosed was a long 3 ½ years. It involves various types of chemo administered through an IV in his “Port”, placed into his spine by a spinal tap, injections in his legs, as well many different kinds of pills he had to take nightly, weekly and monthly sometimes up to 18 pills at once. He had multiple procedures like spinal taps every 3 months, bone marrow aspirations to check for remission, and surgery to have a port a cath put in place. The “port” is a small catheter inserted into his artery and it is how they would access a vein not only to administer his IV chemo but also to draw his blood to check on how he was responding to his chemo. There were different stages of the treatment process some stronger and harder than others, some requiring an inpatient stay, and some requiring him to be isolated at home so he wasn’t exposed to any germs.
Due to all his complications, Ryan spent over 2 months in the hospital where most kids would have had outpatient treatment after 4 to 5 days. There were things Ryan had gone through that even stumped the doctors. He lost layers of skin off the palms of his hands & feet and had rashes from head to toe. The infections took months and many different kinds of antibiotics to beat. He had allergic reactions to some of the medication so it was hard to get his infection under control. Strep had settled in Ryan’s knee and would flare up over and over again finally after 3 surgeries and multiple needle drains of his knee he finally got rid of the infection but ended up not able to walk for over a year. The chemo had caused mouth sores and upset stomach so bad Ryan had lost over 15 pounds in just a few weeks and ended up on IV nutrition for 16 hours a day for 3 months. His liver couldn’t handle the amount of chemo and started to fail during this time as well so it was a delicate balance between giving him as much chemo as the doctors felt he needed, but not too much to damage other organs. We felt like we were back at stage one teaching him how to eat & walk all over again.
It is hard to believe he is now off treatment and healthy. We are still seeing the long term effect of what chemo does to a child’s little body, like emotional issues, learning disabilities, and lack of organizational skills. We are currently work with neuropsychologists that will follow Ryan for years to come helping us figure out what the life time effects chemo has had on him. Even with all he has been through Ryan kept a smile on his face (most of the time) and loves to talk about how great Riley has been to us. Ryan was nominated as a Riley Champion in 2012 and raises awareness for LLS pennies for patient program, he even grew his hair out for Locks for Love to make a wig for others who have lost their hair.
Evan Meade was diagnosed with Acute Myeloid Leukemia (AML) on January 27, 2010 just two weeks after his 16th birthday. With what he thought was the flu, Evan went to the doctor to determine why he got so sick in just a couple of days. Blood tests revealed that he needed to go to Riley Hospital immediately and be tested for leukemia.
Two days after Evan was diagnosed, his health spiraled downward quickly. Evan was moved into the Intensive Care Unit at Riley Hospital for Children fighting for his life while all organs began shutting down. His body enlarged from 220 pounds to 280 pounds and then eventually down to 140 pounds. He was placed on a ventilator, kidney dialysis, his lungs collapsed and filled with fluid, his liver was not functioning, his brain swelled and his body filled with infection eventually removing his spleen. All of this while his body was still trying to fight out the 97% Leukemia cells that had filled his body.
After the first round of chemotherapy it was determined Evan was in remission and the chemotherapy was working. Evan endured five rounds of chemotherapy staying in the hospital for up to 35 days each round of chemotherapy in all over 180 days in the hospital over a nine-month period. Evan still continues to have blood work and checkups every six months at Riley Hospital making sure the leukemia is still in remission.
In 2011, Evan started the Franklin Community High School Dance Marathon and continues to speak on behalf of Riley at various events. Evan was also honored to be a 2012 Riley Champion.
Diana was a 28 weeks, 3 pound 2 ounce preemie and has had 57 surgeries in all at riley and Lutheran combined. She has had eye straightening surgery, tendons tightened and lengthened, and numerous neurosurgeries. 21 surgeries in all at Riley. Her only seizure was at Riley. She spent 7.5 weeks straight at Riley 5 years ago, after having spent most of October in Lutheran Hospital. She even spent Christmas at Riley, and Santa was still able to find her. Diana has had 5 surgeries just this year and will be having her 6th during PUDM 2017.
Diana was named a 2014 Riley champion the weekend of PUDM. She used her title to show other girls that having a disability and being in a wheelchair will not slow her down. She had thyroid cancer and had battle it for 4 years. She also has Cerebral Palsy and left sided weakness. We do not know what the future holds, but for now we celebrate today and our family being together. She is in the hospital right now so if you could send your thoughts and prayers their way that would be greatly appreciated!
Jeremy has breathing issues due to asthma. He has been hospitalized on several occasions due to his oxygen levels dropping dangerously low. He is also seen by the Sleep Clinic at Riley for Sleep apnea. He has also had a few surgeries like getting his tonsils removed, and placing tubes in his ears. Thanks so those at Riley that have taken care of Jeremy over the years he likes race cars, motorcycles, legos, basketball, baseball and football.
Juliana was born with a hand that was not fully developed. She has had a few surgeries, one surgery to take bones out of her feet and place them in her hand. This was done to hopefully give her better use in her hand. Thanks to Riley, Juliana is a young girl that likes princesses, Sofia the First and Doc McStuffins on Disney channel.
Jacob was born three weeks premature on July 9th, 1999. Within a week he had lost weight and was hospitalized with Jaundice. In addition, he also had lactose intolerance, causing him to have problems digesting milk. He was able to overcome these complications at birth but his home life was characterized by uncertainty. Jacob has had a very hard family life because his biological parents were not equipped to take care of a newborn with health problems. Due to the instability at home and severity of Jacob’s medical condition during infancy, his grandmother, Brenda, took guardianship of Jacob when he was three weeks old.
Throughout the first few years of Jacob’s childhood, we began to notice signs of autism. He was formally diagnosed at the age of seven and was taken to Riley with Mild Autistic Spectrum Syndrome. Jacob has received great treatment from Riley and has learned to adapt to his specific case of autism. He loves animals, swimming, exercising, bowling, roller-skating, biking, and playing the wii. While Jacob does not like to be touched, he is a very happy child with a lot of love to give and sometimes accepts hugs as “punishment” for being good. Jacob and his family are very grateful for the help Riley has given them and hope to contribute in any way to Dance Marathon’s efforts.