Jane Friday's Medical Fund

On Tuesday March 3, 2015, my daughter, Jane Friday, was admitted to Children's Hospital in Minneapolis, MN.   During the 4 days prior, her mother brought her to two emergencies rooms, and one urgent care facility, only to be told that it was just a virus and you have to let it run its course.  Little did we know just how wrong they were and thankfully she did not listen!

Jane was admitted to Children's Hospital with pins and needles in her legs, she lost the ability to walk on her own, and she was in extreme pain.  The doctors were not sure what was causing it and she was scheduled for a spinal tap, MRI and CT Scan.  By the time the results were received, she had lost all reflexes, and paralysis was moving up her body.  The tests confirmed that she had Guillain-Barre Syndrome.

Guillan-Barre Syndrome is a disorder in which the body's immune system attacks part of the peripheral nervous system.  The exact cause is unknown.  Effectively, Jane's body was slowly stripping the covering from her nerves, paralyzing her.

On Thursday, March 5, Jane was moved to the Pediatric ICU.  The paralysis continued to move up her body, and began to impact her breathing, she was losing movement in her arms and hands.  On Saturday, March 7, Jane was intubated and placed on life support.  I will never forget holding her hand as she was about to be put under to have the tube inserted, and her pleading with me "Daddy please don't let them do this to me!"  Trying to reassure her that it was only temporary, and that she was going to be fine, never knowing the battle she was in for.

Within two days of being intubated, Jane was completely paralyzed from the neck down.  There is no known cure for Guillain-Barre Syndrome, but they attempt to treat it through IV-immuno globin, and by plasmapheresis.  Jane received both of these treatments.

The course of Guillain-Barre Syndrome is a fast downward spiral into paralysis, followed by a plateau, and then slow recovery.  In some instances the effects can be fairly minor, but in Jane's case she had what is considered a severe case within the spectrum.  Seventeen days after she was admitted to the hospital, Jane began to flicker her arms again.  I cannot explain as a parent how incredible the feeling was even to see a minor twitch.

Unfortuntely, becasue of the length of time she had been intubated, after three weeks, Jane had to under go a tracheostomy and have a tube inserted surgically for her to breathe.

Jane spent a total of five and a half weeks in Pediatric ICU.  As is the course with Guillan-Barre Syndrome, her movement was slowly returning, but the curse of the syndrome is all the pain that Jane experienced as she lost all movement, she gets to reexperience as she regains it.  Witnessing her experience this pain, and not being able to take it from her is devestating.

On April 2, Jane was transferred to Gillette Rehabilitation Hospital in St. Paul.  Since she has been there, there has been some great improvement.  Her trach and feeding tube were removed, and the movement in her arms and upper body are greatly improved.  The pain has decreased, but is still debilitatng.  Unfortunately, movement in her legs is still very limited, and she is still a ways from beginning to learn how to walk again.

Prior to this happening I was amazed at parents' ability to handle situations like this, and the strength they showed.  I wondered how they did it.  Now I know, as parents, we have no choice but to handle and cope with it so we can be there for our children.  The fact of the matter is, however, that we cannot do it alone.  I am so grateful to Jane's mother, our families and all of the friends of Jane that have supported Jane and us through this.  Unfortunately, it is not over.

I have always been proud of my daughter, as most parents are, but the strength, determination, and courage that she has shown are incredible.  In the past seven weeks, she has taught me about dealing with the adverse in a positive optimistic fashion.  She is handling what no 15 year old should have to handle with grace and a smile.  I thank God for giving Jane to us.  She is truly a gift!

It is expected that Jane will be in the Rehabilitation hospital for at least another six weeks.  She will then have on-going out-patient physical therapy for at least six months.  Thankfully, and it is the thing that we as parents hold on to, she will fully recover!!

As a result of this, we have uncovered and unreimbursed medical expenses that will exceed $25,000 and will probably be closer to $50,000.  This is an expense that we cannot absorb, and to make sure that Jane continues to receive the rehabilitative care that she needs, I am asking for your help.  This is not something that I have come to lightly, but from my own personal experience, I have learned that when we do not have the answer, our only option is to ask for help.  I have no answer, and I ask you for your help.

Thank you all for your prayers!  I know that it has helped.  Jane's progress can also be followed on her caringbridge site by searching for janefriday.