Johns wish while battling TTP/aHUS

This story had a good beginning. A beginning that lasted five years, then something happened. Something so intense and overwhelming that stripped this family of daily life, routine, hope and all sense of the world. I want to share their story because this story can happen to any family. It has happened to so many families. It will happen to more families. A story of one family allows us the opportunity to provide support to many, to help when it happens, and to bring a dream and solace to this one little boy. This story is close to me, for he is my neighbor, my friend and a child that has brought light to everyone around him, until one day when he couldn't.



Little John is five years old. He is smart, curious, hyper, and full of love. This child has more energy than my five young dogs combined. Little John uses his physical energy by hopping and jumping, running, dancing and making everyone happy. Little John has a heart that beyond that of any living being I have met. Last Christmas (at age 4) he saw a homeless man on the street and told his mom that he would give up all his toys for Christmas so they could bring home the homeless man and give him a place to live.

Every day when I pull into my driveway, Little John would be in his front yard, run to me and scream Header! He would jump into my arms and ask how my day was. No matter my day, it became amazing in that moment.


Then one day,:: Little John wasn't there.
I knew that he had a cold. I knew that his mom had taken him to the doctor. The hospital sent him home twice and said that he had a virus. I walked to his home. He was on the couch. He was blue, lethargic and barely unable to communicate.



His mom, decided that he needed to be taken to a different hospital. Clearly the child in the above picture was ill and needed help. She gathered her baby boy in her arms as he screamed in pain and put him in the car. She drove him to another hospital.


As they entered the second hospital, the doctors rushed toward him, put him on a gurney and rushed him to a room. Within minutes Little John was placed on a helicopter and flown to Children's Hospital in Oakland.


His mother and father filled with questions and a lack of answers stood helpless. They only survived by the air that naturally filled and exited their lungs. Doctors flooded around their son as they started to yell out phrases like, "failing kidney" "liver not working."


That first night was long and scary.


His liver was functioning below 20%.


The day before Little John was running in the yard playing.


His kidneys were functioning at 10%.


The night before, Little John was dancing in the kitchen.


His fever was rising and he couldn't produce urine.


The night before he was singing and making up jokes while hopping up and down.


The realization came slowly, but hard. It snuck in but smacked like a boulder. Their son was dying. The five year old that kissed his momma the day before, the five year old that smiled the day before, the five year old that played the day before: he was in this moment, for no reason at all, : Little John was dying.


His parents stood by with their hearts ripped open and gave him all of the love and support that he needed. They knew that his life was no longer in their hands. Their lives, in that moment, changed forever. No matter the outcome, their lives changed forever.


I went to the hospital the following morning to offer anything. What can you offer in that moment to a parent that is standing by her five-year-olds bedside praying for him to show that incredible smile again? I didn't know what to say, what would matter or how to offer it. I took Little John a teddy bear.

He was in the ICU and I could only see him through the window. He looked up, he waved and my heart broke into a million irreconcilable pieces. Those pieces belonged to his mother, his father, his disabled sister, to Little John and selfishly to me too.


The hospital worked tirelessly to keep Little John alive. There were many scary moments in those first two weeks. Every moment was terrifying to his mother and father as they sit at his side. His mom appeared calm. She was absorbing the trauma. His father couldn't sleep or eat. His father would burst into tears and scream to the world asking why this happened. He needed to know why his son was lying in a hospital bed and dying. A parents fear and grief is more powerful than anything in this world.


Little John had to be placed on dialysis, receive plasma transplants, received a central line, a feeding tube and a host of other treatments. The doctors, there were so many doctors, worked daily to keep him alive and figure out what was wrong. They juggled a variety of different diagnosis, but they could never decide on one. Meningitis, a variety of forms of it, was discussed and discarded. HUS was up for option, then Atypical HUS, TTP, and the list goes on.


Little John remained in his ICU bed, with parents by his side, for two months. Mom and dad could only hope for a diagnosis that would allow their baby boy to live, to be healthy, to one day come home and stand in their living room and shoot them his incredible and heartwarming smile.


The doctors finally decided that they couldn't decide. His symptoms are that of a child with Atypical HUS and TTP, but there are no cases of a 5 year old with these, so he is in the grey area between them. His diagnosis is of AHUS/TTP.


Little John finally started to get better. This is great news. He was able to come home for Thanksgiving. This is wonderful and amazing.


But:
Little John is not cured. He is not healthy. He must go to the doctors daily. His mother and father can give him all the medicines and treatment, but there is always the known fact that he is only temporarily better.


Little John has blood disorders.


He is only temporarily better.


This is haunting and a nightmare that no family should ever endure and yet so many have and will.


Little John made one request when he was in the hospital, hooked up to numerous machines and fighting for his life.


He asked his mom that if he got better could they go to Disneyland.
That's all this little boy wants as he continues to fight for his life. His family created a GoFundMe.com page and is trying to raise money so that mom, dad, Little John and his disabled sister can go to Disneyland and forget for even one minute the trauma and awfulness that they have endured these last three months as well as what is to come in the future.
This boy was healthy, happy and jumping and 12 hours later he was dying in a hospital with no answers as to why. The diagnosis is uncertain and so is his future.
His family does not have the means to take this trip to Disneyland. If they had the means they would take him in a New York second, but they don't. So they took the step to ask the kindness of strangers and family to help them. I, too, am asking for help for Little John. One wish, one dream, for a five year old boy, will give some happiness to a tragedy that will plague his health and happiness for the rest of his life.


Last month San Francisco pulled together as a community and made BatBoy's wish come true. San Francisco was transformed into Gotham City, people donated, attended, and made an entire day for one little boy. This little boy, Little John, who will continue now to fight for his life, for the rest of his life, is just asking to go to Disneyland with his family. As mothers, fathers, brothers, sisters, men, women, friends, and humans, :let us come together and donate to help this bright and shining star.
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Organizer

John Lisa Holly 
Organizer
Concord, CA
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