I recently came across a group called Peyton's Promise of Hope on facebook. I loved how they are helping to raise awareness of Mitochondrial disease by creating story cards for both childen affected by Mitochondrial disease and their siblings. If you click on their photo tab you will be able to see all the Hope Kids and Hope Sibling. They are beautiful!
Here is a note by Peyton's mom, Katy:
Our Journey to Peyton's Promise of Hope
Peyton was the child who never followed the rules, but not in the way you might think. Her body refused to cooperate in the way a body should. If our doctor said it wouldn’t happen it did, if our doctor told us to expect an easy ride we were in for a disaster. We learned to expect the unexpected, but we didn’t know why. We were told at first: some kids are just slower, some kids are just smaller, some kids are just sicker, some kids are lazier, some kids just require more sleep, and some kids just don’t react the way we would expect. At first we accepted this as true, but we soon had to ask ourselves was it normal for one kid to fit all of those descriptions without a reason? The answer for us was no.
Peyton started exhibiting many signs of a serious problem, but to our pediatrician and several of the specialists we were sent to, it didn’t add up. Peyton had fevers all the time that never turned into illness. Peyton would sleep for days on end with no explanation. She would temporarily lose skills nearly every time she got sick, and was slow to gain them back. She began adding body system after body system to her list of medical problems, but there was no connection. At three Peyton had a kidney infection that was very difficult on her body. She never fully recovered from that before getting pneumonia four months later. At that point many of the issues she had previously developed got worse. Her stamina decreased, her tone decreased, she developed weakness, and she had lost nearly half of the skills she achieved during early interventions. It was then we were sent to a geneticist and told about mitochondrial disease. Before we could even digest what that possibly meant for our daughter, she had developed a seizure disorder, and stopped eating, something that she used to love. We were immediately referred out to a specialized center for mitochondrial disease testing.
It was a difficult year full of lots of invasive testing and hospitalizations for various reasons. Right before Christmas we received the answer our doctors had been waiting for, and we had dreaded hearing. Peyton was diagnosed with mitochondrial disease through a muscle biopsy. It was found that she had defects in complex I and III, and that all of her complexes were deficient to some degree. In other words her mitochondria did not function well enough to keep her cells running, and the associated organs could not work either. It was a very difficult time for our family, not because we didn’t know how it would affect her, her body was already making that perfectly clear, but because we now knew there was no chance she would outgrow the medical problems she struggled so much with. We knew her struggles would only get worse, and that this was it for her for the long haul.
Peyton is now a beautiful, amazing, five year old girl, and our inspiration to say the least. She is wise beyond her years and never feels sorry for herself. She still continues to develop new medical issues, and struggle with the ones she developed in earlier years. It has become a daily challenge finding a treatment regimen that keeps her healthy enough to function. It seems as soon as we get the puzzle pieces all lined up we realize half of them went to a different box. It is a battle inside and out trying to manage her disease, and it is impossible to stay a step ahead. This year alone she was hospitalized twelve times and became completely J tube fed. There is no way to keep up with what mitochondrial disease has thrown our way, but she never gives up. We try our best to take everything a day at a time, and try not to fear what the future holds. This is not what we would have planned for our daughter, but the reality of it is her life was never ours to plan. We have learned so many important lessons from her. I do not believe that God made her sick for a reason, but I do believe God blessed her with the person that she is and the lessons she would have to offer, because she was going to be sick.
This year myself and several friends whose children are also severely affected by mitochondrial disease decided to set up a page called Peyton’s Promise of Hope. At first it started out with a collaborative awareness video, but that made us realize how much bigger our project could actually be. Peyton’s Promise of Hope puts a real face to the daily struggle and heartache that mitochondrial disease causes. So many times people believe to have a progressive life threatening condition, or for some to be terminal, that you must always look “sick.” That is simply not the case with mitochondrial disease. So many of these children could be passed on the street without any idea how truly affected they are. We also wanted to destroy the misconception that for all children with mitochondrial disease it is either easily manageable, or for all fatal. It is not a black and white disease. Just like many other diseases there is a spectrum of severity and progression. While some may be mildly affected and progress slowly, others are severely affected and progress rapidly. There are also many who lie somewhere in the middle. The important fact to remember is that all of these children regardless of current severity have serious struggles and could have their lives changed in an instant. For children with mitochondrial disease something as small as a simple cold virus or flu can cause serious progression of the disease, and for some organ failure or death. It is a harsh reality that no one should have to face. These are real children, and real families having to live with this on a daily basis.
Peyton’s Promise of Hope is exactly as the name suggests. We cannot promise a lot of things to families like ours, but what we can promise is to provide hope through spreading awareness. As with any disease awareness is one of the first keys to finding a cure. We have future goals of turning Peyton’s Promise of Hope into a nonprofit organization, which will raise money for out of pocket costs for parents of children with complex medical needs caused by metabolic and neuromuscular disorders, as well as raising money for mitochondrial disease research. We will never stop fighting for our children, we will never forget those who have already lost their battle, and we will never stop hoping for a cure.