CHARLIE GARD'S ANGELS
by Maria Hopfgarten

This is not a political post. This is not a post to take sides. This is not a post about right or wrong.

This is a post about compassion and heart for the hardest decision a caregiver has to make. This is a post about knowing what a mom's eternal love for their child feels like. This post is about making decisions for a loved one that will hurt so very bad for you. Decisions that can't be reversed or regretted. This post is for the utmost respect for parents who have had to say farewell to their child, and wake up every day with a void where their child should be laughing, screaming, and living.

None of us know the conversations or decision that took place in Charlie Gard's hospital room except his parents and his doctors. The media might think they know, but they don't. Period.

What I do know is that there is today no cure for mitochondrial disease. There is no miracle treatment in the US or anywhere else in the world. There is hope for drugs that can prevent the disease from progressing, but there is yet a miracle drug to be found that can restore failed mitochondria.

What I also know is that the heart breaking decisions Charlie Gard's parents were faced with, I have been faced with. My friends have been faced with these decisions. We didn't appear in courts or social media. We fought next to our children and loved ones at the bedside of a hospital room in an intensive care unit. I have hold my child's hand, and the hand of other very sick children, who I knew the most difficult decision had been made for. I knew it would be the last time I hold the hand still being warm.

These decisions were never made in a vacuum. They were never made by either the medical team or the parents. They were made together, not always in parallel. Most often not in parallel. The medical team seeing the signs earlier than the family. The medical team carefully bringing up the topic of quality of life. The medical team trying to feel out where the family stands. Trying to bring options to the table. Tears, hugs, and anger all bundled up into one crazy mess. Denial, hope, despair. Achy bodies from too much tears and muscle tension. Blurry eyes from too little sleep and too many tears.

When I understood the magnitude of mitochondrial disease and the devastation of the disease, I feared for years that I would have to make a decision like Charlie Gard's parents. I feared that my child would end up on life support, and that taking out the breathing tube would mean no more breaths for my child. I feared that I would struggle with the right decision, and knowing when the end had come.

In the end, I knew. I knew like Charlie Gard's parents knew. I knew that the only right decision for Jacob was to remove his breathing tube. He had slept for days. He wasn't sick with another pneumonia or virus. His body simply couldn't take another breathe. There was no medicine in the whole wide world that could change that.

I will never forget what unfolded in the PICU room that last weekend of Jacob's life. We were surrounded by Jacob's circle of friends who loved him so very much. There were tears and laughter from all the stories and memories our boy had created in his ten years of life. There were doctors by our side who didn't just care about medicine, but cared about our boy and knew they would miss him dearly. There are memories from that day that will make me start crying any time I think about them. When his long standing best friend and nurse hugged him like she could never let him go. When Sarah refused that this was the time to let go because she needed more cuddle time with his brother. When my dad called me right before we had to make that dreadful decision reality. When I laid next to you in the hospital bed your last night tracing your face with my fingers, so I would never ever forget a single piece of your beautiful face. And I will never forget your last breathe.

There are too many Charlie Gard angels to count them. They are happening every day in hospital rooms around the world. There is no right or wrong. There is no taking sides. There is just tragedy to have to say goodbye to a child where there is no cure in sight and no more medicine to help. What I hope for Charlie Gard's parents is that outside of the media they had time to be with their Charlie, and that they came to peace when the most devastating decision was finally made.

This post is for Charlie Gard's angels and all the parents and caregivers out there who had to make the most dreadful difficult decision in their lives. They did it out of love for someone they loved more than life itself.

Love,

Maria.

CHARLIE GARD'S ANGELS
by Maria Hopfgarten

This is not a political post. This is not a post to take sides. This is not a post about right or wrong.

This is a post about compassion and heart for the hardest decision a caregiver has to make. This is a post about knowing what a mom's eternal love for their child feels like. This post is about making decisions for a loved one that will hurt so very bad for you. Decisions that can't be reversed or regretted. This post is for the utmost respect for parents who have had to say farewell to their child, and wake up every day with a void where their child should be laughing, screaming, and living.

None of us know the conversations or decision that took place in Charlie Gard's hospital room except his parents and his doctors. The media might think they know, but they don't. Period.

What I do know is that there is today no cure for mitochondrial disease. There is no miracle treatment in the US or anywhere else in the world. There is hope for drugs that can prevent the disease from progressing, but there is yet a miracle drug to be found that can restore failed mitochondria.

What I also know is that the heart breaking decisions Charlie Gard's parents were faced with, I have been faced with. My friends have been faced with these decisions. We didn't appear in courts or social media. We fought next to our children and loved ones at the bedside of a hospital room in an intensive care unit. I have hold my child's hand, and the hand of other very sick children, who I knew the most difficult decision had been made for. I knew it would be the last time I hold the hand still being warm.

These decisions were never made in a vacuum. They were never made by either the medical team or the parents. They were made together, not always in parallel. Most often not in parallel. The medical team seeing the signs earlier than the family. The medical team carefully bringing up the topic of quality of life. The medical team trying to feel out where the family stands. Trying to bring options to the table. Tears, hugs, and anger all bundled up into one crazy mess. Denial, hope, despair. Achy bodies from too much tears and muscle tension. Blurry eyes from too little sleep and too many tears.

When I understood the magnitude of mitochondrial disease and the devastation of the disease, I feared for years that I would have to make a decision like Charlie Gard's parents. I feared that my child would end up on life support, and that taking out the breathing tube would mean no more breaths for my child. I feared that I would struggle with the right decision, and knowing when the end had come.

In the end, I knew. I knew like Charlie Gard's parents knew. I knew that the only right decision for Jacob was to remove his breathing tube. He had slept for days. He wasn't sick with another pneumonia or virus. His body simply couldn't take another breathe. There was no medicine in the whole wide world that could change that.

I will never forget what unfolded in the PICU room that last weekend of Jacob's life. We were surrounded by Jacob's circle of friends who loved him so very much. There were tears and laughter from all the stories and memories our boy had created in his ten years of life. There were doctors by our side who didn't just care about medicine, but cared about our boy and knew they would miss him dearly. There are memories from that day that will make me start crying any time I think about them. When his long standing best friend and nurse hugged him like she could never let him go. When Sarah refused that this was the time to let go because she needed more cuddle time with his brother. When my dad called me right before we had to make that dreadful decision reality. When I laid next to you in the hospital bed your last night tracing your face with my fingers, so I would never ever forget a single piece of your beautiful face. And I will never forget your last breathe.

There are too many Charlie Gard angels to count them. They are happening every day in hospital rooms around the world. There is no right or wrong. There is no taking sides. There is just tragedy to have to say goodbye to a child where there is no cure in sight and no more medicine to help. What I hope for Charlie Gard's parents is that outside of the media they had time to be with their Charlie, and that they came to peace when the most devastating decision was finally made.

This post is for Charlie Gard's angels and all the parents and caregivers out there who had to make the most dreadful difficult decision in their lives. They did it out of love for someone they loved more than life itself.

Love,

Maria.

10 TAKEAWAYS FROM THE UMDF CONFERENCE
by Maria Hopfgarten

 

We all had a wonderful time at this year's UMDF (United Mitochondrial Disease Foundation) conference. This year's destination was Pittsburgh. We had packed days of learning, meeting up with new and old families and doctors, and some well deserved time with our own community of Colorado Mito moms. 

Here are my 10 takeaways from the intense conference days: 

  • Knowledge. There is a wide range of presentation topics during the family meetings. There are three tracks running simultaneously tailored to children, teens, and adults living with Mitochondrial Disease. I always leave with a laundry list of things to follow up on, everything from possible new seizure medications and other possible treatments.
  • Research. UMDF's mission is to facilitate and support mitochondrial research. The only treatment option mentioned in 2007 when I attended my first conference was Coenzyme Q10. Today, there is not enough time in the opening session to cover the details of the ongoing clinical trials and studies for Mitochondrial disease. It will take time, not all options will work for all patients, but there is forward movement. There are actual drugs in clinical trials, and if everything goes as planned, epi-743 will be FDA approved in 2015. The research is giving us all hope.
  • Connections. It is always the people who make the conference a success. In the middle of this life-threatening progressive disorder, there is laughter, fun and hope. This disease connects us. One thing that makes this conference unique is the way doctors and families interact. We ended up having two Mito specialists at our table Friday night. After dinner, we spent the rest of the evening talking Mito with our own local Mito researcher and the doctor who saw several of our kids back in Cleveland when they were only little babies. Very smart minds all in one room. 

  •  The Mito doc is in. One of the best parts of the conference is that you can meet with Mitochondrial Specialists from all over the country and discuss your own child or your own diagnosis. Since many patients can't easily travel to specialists around the country this is a great way to get second opinions. I left with a lot of good stuff to further research when it comes to GI issues, seizure medications and labs to run.
  • Teens. There is a whole track of presentations for teens living with Mitochondrial Disease. The teens had a blast together. They were raising around the hotel on their scooters. They were all dressed up for the Friday banquet. After dinner, they all headed up for their own prom in their beautiful dresses and big smiles. It is hard to be a teenager. I can only imagine being a teenager living with Mito.
  • Our booth. For the first time, Miracles for Mito had its' own booth. We got to tell people what we are all about. We showed them our videos. We gave out our information. More than anything, we got to listen to people tell their stories. It was one of the best parts of being there. 

  •  Our t-shirts. Our first Miracles for Mito t-shirts were a hit! People from all over the country want to wear one! We are hoping to very soon have them up for sale on our website. 

  •  Pittsburgh. Pittsburgh is a beautiful city! To sit next to the water watching the sky line on a Thursday night with a lovely group of ladies is definitely something to remember. The city reminded me of the Southern part "Sodern" of Stockholm with its' hills and water. It was good to be back on sea level.

 

 

 

  • Mito moms. We were five Mito moms attending from Colorado this year. We shared excitement and new knowledge with each other. We ran the Miracles for Mito booth together. We ate, drank, slept and shared our thoughts on the new things we learned. We enjoyed the Sheraton lounge together. It was good to have the support of old friends as new information and ideas were thrown our way.

 

  •  Confirmation. The conference was also a confirmation of the work we do for Miracles for Mito. We have come along way in less than four years time. The community we have built up in Colorado. The grants we are able to support families with. The ability to keep the Mitochondrial Research Lab open are only a few things on our list of accomplishments. We are doing good work, and these last couple of days have given us new fuel to continue on this path! 

 There are many memories made in a short period of time. I leave you with a photo of this beautiful boy Sam. His parents laughed and cheered Sam on every time he smiled. That smile will rock me to sleep tonight. 

Photo: New friends at the Mito conference

 

Love,

Maria

President, Miracles for Mito

Mom of 8-year old Jacob living with Mitochondrial Disease