Age: 12 Years Old
Diagnoses: Hypothalamic Glioma
Meet Jacob Aho. Jacob is a charming and lovable 12 year old boy who has been battling brain cancer for over 8 years. In that time Jacob has had over 50 surgeries (we've lost track) for different reasons, multiple chemotherapies, many medications, additional diagnoses, weekly physical, occupational and speech therapies...and the list goes on.
It was just before Jacob turned 4 when our world was changed forever. We brought Jacob in for an early morning MRI and we were certain it would show nothing. We were wrong. Our baby had a tumor.
This was the start of the journey for Jacob and our family. Jacob was sent to Lurie Children’s Hospital for surgery and to place a shunt to relieve the pressure buildup. He started treatment almost immediately and the hospital became a second home. The hope was that chemotherapy would work to stabilize or shrink the tumor. Unfortunately, with just over 3 months of treatment, things went south fast, and an inoperable tumor became one that needed to be operated on.
The operation was a success, in that it saved his life, but he lost almost all the things he had learned in the 4 years of his life. His speech was soft, his strength and balance gone, and his stamina was non-existent. Along with all of this, Jacob's short-term memory was gone. All of the things every little boy wants to do - jump, run, play, laugh...were gone.
We brought him home, to his twin sister, about 2 months later – right before the 2014 New Year. As glad as she was to have her brother back, she needed to (at the age of 4) learn how to be around him again. Move slower, speak slower, be gentle. Jacob came home in a wheelchair, unable to walk, but has worked so hard that, although he still cannot run or jump, he can walk by himself. He fatigues quickly, but he tries.
This disease and the resulting treatment have left Jacob missing out on so much. One of these things is riding a bike. Jacob never learned how to ride a bike because he was too young when he was diagnosed, and after that, well... it was just a lot. It all took too much from him and out of him. The height off the ground, the handlebars so far away, balancing (even with training wheels was difficult), knowing to push back to brake – it was all too much. So, he watched everyone else ride instead.
Jacob has learned to adapt to most things this disease has come with. His personality and his attitude have helped him to overcome so much. But it would be so nice to give him one thing back. It would be nice to have him get on HIS bike and ride down the street, instead of his mom making him do boring walks when the weather is nice – he could ride.
I have no idea what this bike could or would look like in order to accommodate his needs, but it's amazing to think that maybe there is something out there for him. A way to give something back to Jacob's childhood.