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