Tonight's picture was taken in April of 2009. Mattie was home between treatments and he and Peter decided to build this BIG bridge in our living room. The bridge was constructed out of cardboard boxes. A Mattie favorite! Mattie decorated the materials too and it was a full day project. Thankfully Peter had these skills and was good at engaging Mattie in all sorts of projects. My willingness may have been there, but may focus, energy, and emotional state depleted my creativity. I am grateful Peter took on that challenge, because when he and Mattie were building, Mattie was happier.
Quote of the day: Some people believe that the parents' views are paramount in every case, or that life should be prolonged at all costs, but British law does not accept either of these views. ~ Dr. Wilkinson
I had a my licensure board meeting today, but before leaving our home, I had the opportunity to watch a bit of the morning news. It was in a news story that I heard about Alfie Evans. When the name came up, I was perplexed, because the story sounded so familiar. It was familiar to me because about a year ago, another family was fighting for a child's life in Britain. Except back then it was Charlie Gard (an infant being treated for mitochondrial DNA depletion syndrome - MDDS). I knew Charlie died, so I was confused..... who is Alfie Evans?
So I naturally went to the internet and looked up Alfie. Alfie is now almost two years old and suffers from a similar diagnosis as Charlie Gard. The parents have had to fight the doctors and government especially with regards to life support. Like Charlie Gard, Alfie has been offered treatment outside the Country. In Alfie's case, a hospital in Rome is ready to help and claims to have options for Alfie. How can one hospital say one thing and another advise a family a completely different way? The answer is.... it happens! We saw it with Mattie's cancer battle. However, the beauty of the United States, is parents have the freedom to take this information and ultimately make the decision as to what course of action to follow. We do not feel we need a bureaucrat to take on this decision and responsibility for us!!!
Overall, I honestly can't believe yet another family is dealing with life and death decisions in Britain and the doctors and the government are fighting over this child. I am getting VERY frustrated with the media muddying the waters and making this about Christianity, pro-life, or you insert the POLITICAL jargon of choice.
The issue with Charlie Gard and Alfie Evans in my opinion has NOTHING to do with religion and beliefs. But everything to do with freedom of choice, decision, and ultimately who we believe should be in control over our own destiny? I for one do NOT want the government dictating anything to do with my health care of the health care of those I love. In fact, the hospitals in Britain are lucky they aren't dealing with me. I empathize with the Gards and Evans! If you are on the fence about this, I suggest taking a step back. Put down the media interpretation of the situation, and think! What if this were my child? Would you really want doctors and your government telling you that YOU need to remove life support for your child or worse that YOU can't take your child to another country to receive treatment!?
I SAY NO thank you and thank goodness, I live in the United States of America. Where what we debate on is whether someone should have the right to DIE, NOT live. In fact, Alfie, was taken off ventilation on April 23, but continued, surprising the doctors, to breathe. He has also been deprived of water and food. The parents want to take him to Italy, where a hospital is willing to treat him. In fact, Italy has made Alfie a citizen! Yet, the British government says no, and has police stationed to keep the boy from being rescued.
This is not a soap opera or a movie, this travesty is happening in our world in 2018. I am left speechless. The parents are being made out to be unstable and incapable of making this tough decision. Really??? If knowing your child has a rare condition that is killing him, wouldn't that make you unstable too? Frankly if this didn't push a parent on the edge, then I would say something is wrong with the parent. However, doctors and governments are NOT always right! When they start pronouncing what we should and should not do regarding our right to access medical treatment, this crosses a line.
Losing a child to any disease is heart breaking. But what is even worse, is a child dying, in which you as the parent feel like you haven't done everything MEDICALLY possible to save your child. My thoughts are with the Evans' family and others struggling to have the freedom of choice regarding their medical care.
Fight over Alfie Evans, A brain damaged baby, Divides U.K.:
https://www.nytimes.com/2018/04/26/world/europe/alfie-evans-doctor-parents.html
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