Pope Francis to Huntington's sufferers: you are precious to God: “May none of you ever feel you are alone; may none of you feel you are a burden; may no one feel the need to run away. You are precious in the eyes of God; you are precious in the eyes of the Church!”
In 2012 I lost a very dear friend to Huntington's disease. She was only 40 years old.
Quote: "Huntington’s Disease is a genetic disorder that affects between 5 and 10 people per 100 thousand on average, worldwide – though the prevalence of the disease varies greatly from place to place, with the prevalence in much of Asia at 1 per 1 million, while in the Lake Maracaibo region of Venezuela the prevalence is as high as 700 per 100 thousand people.The onset of the disease typically comes between 30 and 45 years-of-age, and often manifests through Parkinson’s-like symptoms, though end-stage Huntington’s usually involves full-blown dementia as well as severe physical disability.Huntington’s Disease has no cure."J.Ann's struggle began decades earlier when her mother died of Huntington's disease while J.Ann was still a child. That was the first thing Huntington's disease stole from my friend, but it would steal much more before it finally took her life.
As the disease is often passed on from mother to children, she knew it was highly possible she (and her brother) would one day too soon suffer the same fate as her mother. The idea of getting married, having children and growing to a ripe old age were stolen from J.Ann before she was even in high school. Huntington's disease is a viciously brutal enemy to face. As there is no cure, you know its going to win in the end.
She lived her life knowing it would be short. Her family and closest friends lived with this knowledge as well. Our time together was short but very precious.
Because of the disease J.Ann refused to consider marriage or having children. She didn't want to pass the disease on to children because of her own suffering at the loss of her mother and dread that she was going to suffer the same fate. Nor did she want to "be a burden" to a spouse.
She dated, she traveled, she worked and she lived her short life to the fullest before the disease began stealing more and more from her.
We were only in our 20's when J.Ann began losing her freedom's. First her job, then her condo and soon her car. That was the hardest one for her to let go of. She loved the freedom having her own car gave her. It was heartbreaking that last day as she looked at her car for the last time.
At this point she was choking on solid food and had to drink her coffee from a straw that her friends were happy to hold for her. We would drive her around in our cars to give her any sense of freedom we could. The whole time her legs would jerk violently and she'd kick the dashboard until her legs were covered in bruises but she stubbornly wouldn't give up on "going out" and we wouldn't dream of saying no to her.
But the time came when she couldn't stand on her own and her choking on food was getting dangerous. Her family put her in a nursing home. I was married, having babies and my dear friend who had been a bride's maid in my wedding was in a nursing home. It was incredibly hard to comprehend.
It wasn't fair, but disease never is.
I remember getting the call one cold winter night that hospice had called her father to tell her J.Ann's time was coming to an end. I raced to the hospital (along with another dear friend) and sat beside her praying. The Divine Mercy prayer which I should have been praying was absent from my mind, all I could do was pray the rosary over and over.
She wasn't conscience and I have no idea if she had any idea we were there or not, but I hope she knew. I didn't want her to be alone or think her friends weren't still with her right up until the end.
J.Ann had lost her brother to Huntington's disease just months before she lost her own life to the disease. They had been together in the nursing home and watched each other deteriorate as they'd long ago as children watched their mother suffer the ravages of this horrendous disease. This was one of the most painful things I've ever had to witness and I pray to God for other people, their families and friends who go through this.
Quote: "The Holy Father encouraged researchers to continue their work, and called for concrete solidarity in this regard, in a manner consistent with the inherent and unalienable dignity of the human person.“May the Lord bless your task,” Pope Francis prayed, adding, “I encourage you to always pursue it with means that do not contribute to fuelling that ‘throw-away culture’ that at times infiltrates even the world of scientific research. Some branches of research, in fact, utilize human embryos, inevitably causing their destruction. But we know that no ends, even noble in themselves, such as a predicted utility for science, for other human beings or for society, can justify the destruction of human embryos.”Finally, the Holy Father expressed the hope that the lives of every person who suffers from Huntington’s, and of those who work every day to support the sick in their pain and difficulty, be a living witness to the hope that Christ has given to all humanity."
Thank you Pope Francis.
I miss you J.Ann! May you rest in peace.
Julie @ Connecticut Catholic Corner