Lil' Jacob's Medical Fund

Back in the Spring of 2011, 6-year-old Jacob Kitterman lost hearing in both ears. The unknown was now known…he would suffer from the same unknown genetic auto-immune disease as his father. His father, Roy is the sole survivor of this disease having lost both his mother and brother rapidly to this disease. The disease affects both the nervous and muscular systems causing difficulty walking, hearing, and functioning on a day to day basis. Luckily, Jacob was able to use hearing aids to help him hear as he had only lost partial hearing in both ears. This was the only sign of the illness, so we were relieved. He continued to visit the specialist at Le Bonheur and was taken off Prednisone in April 2016.

Jump forward to November of 2015. At the age of 12, Jacob began experiencing tingling in his feet which very quickly spread to his legs and became very painful. His parents Pam & Roy took him to Le Bonheur in Memphis, TN to be placed on the only medicine that seems to work for his father - Prednisone. The doctors were very reluctant to prescribe the needed high dosage to Jacob. By January 2016, he began walking very slowly and could barely make it through the day at school without crying out in pain. He was hospitalized at the end of January because the pain was so severe. He went home after a few days, only to be readmitted a week later due to his level of pain. By February, Jacob could no longer stand or walk on his own. He lost the use of his hands and has suffered further hearing loss and is no longer able to hear with the use of hearing aids. It was only after the hospital finally pumped him full of a high dosage of Prednisone that the disease stopped progressing.

Genetic testing has revealed the defective genes, but the doctors are clueless as to how to treat Jacob. No one at Le Bonheur seems to know what to do, but wait to see if his nerves regenerate. Pam & Roy have requested to have his medical records released to Vanderbilt in Nashville as they have an Unknown Genetic Disease Team that may be interested in his case, we have yet to hear. Meanwhile, Jacob had to leave school mid-way through the 6th grade as he is unable to hear, walk, or use his hands or care for himself. 
Pam & Roy were then faced with a huge decision. How to find and provide the care Jacob so desperately needs. In order to care for Jacob, Pam needs to continue to work in order to keep the medical insurance and Roy has basically stopped working to care for Jacob at home – they have now virtually lost half of their income. They have no options but to use credit cards to pay for medical equipment to care for Jacob at home  that is not covered by their medical insurance.

We’ve been told that the best therapy for Jacob is at an in-patient rehab facility as daily trips to a physical therapy center would be too traumatic for him. Currently the family uses a home lift to get Jacob in his wheelchair and then a mobile lift to get Jacob from his wheelchair to the car. This is extremely hard on his body. We were told by Le Bonheur that there are no in-patient children’s rehab centers in the state of Tennessee. The closest centers are in Atlanta, GA and Jackson, MS. We don’t think he is quite strong enough to go out of state and stay at a center. Pam & Roy  work with Jacob  as much as we can at home, but this will be an extremely long recovery process for him.

Doctors have said that  they can restore Jacob's hearing with a cochlear implant(s) once he is stronger and is off the medications he is currently taking.  

As any of you with a small child can imagine, none of this has been easy for any of the family. One day their son was running around like most 11-year-old boys and the next day he’s unable to walk or use his hands very well. To put the effect of this disease on Jacob's daily life into perspective, he is basically bed ridden at this time. Jacob has hearing loss and is unable to hear the TV, cannot talk on the phone, and has to basically read your lips in order to carry on a conversation. This has made Jacob unable to interact with his friends and family via internet, text, or voice calls. Jacob cannot play his beloved video games as he has lost the use of his arms and hands.  

It is very difficult for Jacob to understand why this happened to him. He just wants to walk again and be able to return to school to be with his friends.

Now, this is where we need your help. We are hoping to raise money to help the family make up for missed income, out-of-state therapy, possibly an electric wheelchair and handicapped vehicle if it comes to that. It would be wonderful if we could raise enough money to make their home handicapped accessible – especially the bathroom as Jacob would really LOVE to soak in the bath.