A Lasting Memory of Me for Grace

My name is Matt and I first got sick when my daughter was five months old. Grace is now seven years old. While most new fathers were on the floor playing with their children, I found myself confined to my bed with severe pain, nausea and no energy.   As the years continued, I always thought I'd get better and be able to give my daughter a normal childhood, a really simple goal, but I never got better.  Instead I spiraled down. The Matt my daughter has come to know is not the energetic, positive, athletic person I had been most of my life.

My daughter Grace has seen me gradually waste away with no pancreas and a disease called Gastropareesis.  I can't keep food or fluid down and am kept alive with a medical device called TPN, which is essentially IV nutrition.  This treatment is designed for short term use, not long term.  With a picc line, there is severe concern for infection.  In my case, using TPN long term, the doctors have told me that I am guaranteed to get infections because of the sugar in the tpn formula.  I have already had one and I went septic.  It was a very scary time.  My palliative care doctor has told me that it is only a matter of time until my next infection and that one infection will eventually kill me.  Combined with the other health risks of my illness and my treatments, the doctors have told me I am terminal.  My doctor  went so far as to tell my family that there is a strong probability that I will not live past December.

This time frame is why I am asking for funds.  My daughter Grace has endured seeing the ambulances take me away, seeing me after countless surgeries and hospitalizations with tubes coming out of me, confined to the hospital for long periods. This has robbed her of part of her childhood.  Before I die, I would like to do something with her to give her a good, happy and positive lasting  memory of me. I want her to have an experience where we can get away from here and do something where the focus is on her and we can forget for a time that my time with her is running out.  That goal takes magic.  Magic that can only be found one place.  Disneyland.

I went to Disney World as a child and it's one of my best memories of my time with my parents.  I desperately want that for her.  My wife and I haven't been able to save money because I haven't been able to work and we've been surviving on her income.  We need help to make this happen.

Airfare for three people, park passes for five days for three people, lodging, food and maybe a little money for souveniers really adds up.  A guest on the Ellen talk show guessed that the cost for three people will run 6-7 thousand dollars.  The remaining three thousand dollars I'm requesting is less important, but would be nice.  I am a writer and love cities with an artists heart.  My daughter loves Native American culture.  Combined I would like to take her on a road trip to Santa Fe, NM.  That trip would be amazing, but Disney Land is the priority.

My bad days are starting to outnumber the good.  It takes longer and longer to recover my energy and my pain is getting progressively harder to control.  I feel my mortality and I know time is short.  Helping my family and I make this trip is a gift that I cannot fully express my gratitude for.  It will help me have piece of mind.  And most importantly, it will give a hurting seven year old girl a chance to be a normal child and a lasting happy memory of time spent with her Dad.