As you all know Steven and I were invited to an TGen event on Wednesday night. I will be honest, I did not really know what to expect going into the evening … but what I didn’t expect was to leave their with such a tremendous amount of hope and love in my heart. It was an event at a home of a beautiful couple who lost a littles of their own about 4 years ago and really felt hopeless through their journey as it took YEARS to get their daughter diagnosed, and then they had no pathway of hope for a treatment. I found myself surrounded by families … families who had lost children, families who were in the battle of their lives for their children, scientist, doctors and amazing business people.
Let me back up for a moment, because meeting these families on Wednesday brought me back to an event in my life with Wylder last spring. Wylder came out of surgery last valentines day and was in the recovery room in my arms. His doctor walked by and said he had put us with this specific nurse because he just “thought we would get a long” … and he glanced at the nurse with a certain look in his eye. When I turned to her … I was not expecting to hear the WHY part of that. She had lost 2 children about 16 years earlier to Mitochondrial disease (another very rare disease). I remember just staring at her. I remember looking and her and thinking … she is okay. How? Is she okay? Does that mean I will be okay? I remember thinking, she is pretty., she is happy, she is kind. I asked her the strangest questions, and she was an instant friend. And I remember I never told her that day, just how much hope she brought me … and in a different way then I had ever had brought to me before. It was an everything will somehow be okay … eventhough it wont, kinda way.
This Wednesday night was such a similar experience … only magnified. There were families everywhere. Families who had had lost more than one child and had teenagers ruling their roost. Families filled with hope that they might one day get a diagnosis to help their twelve year old. Families praying they will get their daughter forever … even if that means she lives with them the rest of the their lives (“at least we can see her smiling face”). Families in the fight of their lives, doing whatever they can for their children. Famlies frustrated with the medical system, families in love medical syetem … no two the same. But we all had a common thread … fighting and believing in our children and wanting a smoother journey’s for sick kids. Steven and I found ourselves NOT alone. I sometimes wish were were more alone, as the pain can be unbearable and others should not have to endure this too. But we are not alone, absolutely not alone. Wednesday night was quite the opposite … we were surrounded by families overflowing with love … no matter the loss and/or journeys they had endured.
That evening we learned a lot about TGen and their plan to get diagnosis quicker (with genomics) and with less poking and prodding on children. And we learned they will not just stop at a diagnosis … they want to become a part of the journey and give HOPE to kids and families. What an institute they are … and we are on board to help with this in whatever way possible. We believe.
Steven and I also had the pleaseure of meeting Shelby’s parents. Shelby’s story is a story filled with MAGIC and HOPE and every family should hear this story. Shelby went from being undiagnosed and in a vegetative state at the age of 10 … to out of her wheelchair and walking and talking at school within three week period. TGen made this possible. This is a story to watch. Magic? … Hope? … whatever this is it, it is powerful AND it is possible. “God makes you for a reason … and God never makes mistakes”
I wish I could have found better words and expression for this blog and what this evening meant to us. We will all keep persevering and there are amazing things and people that want to help . There IS hope. xxoo