Lisa woke on the morning of October 17th with a low grade fever and was feeling fatigued. By late morning her vice had changed, with slurred speech. She was spitting out her own saliva because she could not swallow. In retrospect, she was experiencing descending paralysis, but of course we didn’t know that at the time.

We took Lisa to the emergency room at Elliot Hospital , Manchester NH . While in the waiting room her breathing became more difficult. I expressed my concern and a staff member took Lisa to an examination room.

A nurse tested her blood oxygen level. Suddenly, another nurse entered the room. He picked Lisa up and ran with her. He shouted I have a critical 4 year old. I almost passed out. The nurse who preformed the blood oxygen text explained that Lisa’s blood oxygen level was only at 80%, which is extremely dangerous.

Lisa was moved to an emergency trauma treatment room. There they tried to stabilize her breathing. Despite all their efforts they were unable to help her. At that point the decision was to intubate her. Once intubated Lisa was air lifted to D.H.M.C. in Hanover , NH .

Lisa was admitted to D.H.M.C. pediatrics’ intensive care unit. Unknown to us this would become our home for the next two months. D.H.M.C. sees approximately 10 Guillian Barre/ Miller-Fischer syndromes per year. They have the most wonderful staff along with the smartest doctors. We became a great family.

The doctors ran a multitude of tests, but could not figure out what was wrong. By the next day Lisa was paralyzed from head to toe.

By day 4 they had narrowed the differential diagnosis to; Guiilian Barre Syndrome, Miller-Fischer or botulism. By the weeks end the diagnosis for Miller-Fischer was confirmed.

At this point Lisa had been intubated and had a feeding tube placed. She was sedated with Fentanyl, Versed, Ativan and Morphine. These drugs were used for paing and to have amnesia affect on her. With Lisa being so young the doctors knew she would not be able to mentally handle what was happening to her, hence the amnesia medication.

Lisa had no way to communicate with us, no way to express her fears, pain, if she was hot, cold or if she had and itch. No way to ask questions. However, she could hear, partially see, think, smell and feel. The doctors liken it to being trapped in your own body with no way to escape. It was heart breaking for us to see her in such a helpless state. Many times we couldn’t tell if she was awake or asleep because she was paralyzed with her eye lids half closed.

Lisa eventually had to have a tracheotomy; she remained on a ventilator and was being fed through a more permanent feeding tube.

Lisa was receiving physical therapy while bed ridden. The therapy was excruciating for her, even though they were manipulating her movements. The thing with Miller-Fischer is that the myelin has unraveled from the nerves which leaves the nerve exposed. So, even a crinkle in the bedding would be painful for her. Sponge baths, hair washing, and brushing were unbearable for her. Tears would stream down her little face.

Progress was very slow for Lisa; we would take one step forward and one back. We would pray and pray that she would make it through this. Finally, after 6 weeks on a ventilator, Lisa was able to breath on her own was she was taken off the ventilator. Her trach and feeding tube remained, to protect her airway. She still didn’t have her swallow, gag or cough reflex back.

Lisa was discharged on day 50. We brought her home with a trach, feeding tube and in a wheelchair. She was still unable to walk. She had lost ¼ of her weight and suffered from pain and fatigue but we had our little angel home.

The day after we took Lisa home she started on a long road to recovery. She attended Health South Rehab, where she received physical, occupational and speech therapy four days a week. Lisa’s swallow reflex slowly came back as did her gag and cough reflex. She began walking with a walker. Things were slow but progressing. We were finally able to let Lisa know she was going to have a little sister, (I was 2 moths pregnant when this all started) she was very excited.

After 3 years of rehab Lisa is doing well. She has some good and some bad days with bouts of nerve pain, being the common side effect of the syndrome. She is experiencing the typical Guillian Barre/ Miller-Fischer regeneration pain as the myelin recoats the nerve sheaths.

Lisa still has a slight tongue and eye palsy along with some muscle weakness, especially in her legs.

Lisa goes to school, plays with friends and of course her little sister, attends dance class and is a brownie. We have been honest with Lisa and her condition and she understands her limitations. She is our hero.

We have been blessed with our daughter’s life and health. We pray and work towards a full recovery. We have been blessed with wonderful family and friends who have been a great support system.

There is an old saying, “Out of something bad comes something good.” We have certainly found this to be true in many ways.

Two very dear friends Matt Dido and Max Beersworth were very concerned for out family’s well being. They knew how financially difficult it was for me to have to leave work, to care for Lisa. What happened next was amazing.

Matt got in touch with me and asked if I had plans on such and such date. I asked why. Matt explained to me that the spoke with Jon Thomas and to some local bands about our situation and they have come up with a way to help. So, Matt Jon and the Spider-Bite Staff went to work. They put together a fundraiser for Lisa and our family, which was held at the Hog’s Trough. Along with the support of all the bands that played, Rock 101, Ms. Manch Vegas, friends and all the sponsors it was a success. They worked extremely hard to put this amazing evening together. We can’t thank them enough.

To this day Jon still continues to support Lisa in many ways. His dedication to her is amazing and Christmas would never be the same without Matt, his Fiancé and Max.

So out of something bad came something good. Our daughter is getting better and we have made new friendships, with some amazing people. We love you all dearly and thank you for your continued dedication to Lisa and our family.

Friend forever,

The Daugherty Family