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COMPLICATION OF A BRAINSTEM GLIOMA: A Survivor’s Story by Heather Y
Hello, my name is Heather. I am a brain tumor survivor from the early‘80’s. I am also a stroke survivor with Spinocerebellar Ataxia, and a condition of disordered breathing referred to as Ondine’s Curse. “Cursed” is not how I choose to look at my life. The tumor and stroke took away abilities I had previously taken for granted, but I realize how fortunate I am to be alive. The type of “Brainstem Glioma” that I had would not have been operable 20 years earlier. I received great care at the University of Virginia Hospital and later at a children’s rehabilitation center in Charlottesville, Virginia. Respiratory failure had landed me in the surgical intensive care unit where I narrowly missed having a tenjoyed. My life had turned upside down, but I focused on the things I could still do. It hasn’t been easy because the “movement disorder” or ataxia I have is degenerative. After high school, I went on to college where I graduated Suma Cum Laude from Shenandoah University. I have a diploma in Nutritional Therapy and I have started a blog at http://nutritionaltidbitsandchronicdisease.blogspot.com Currently, I planning to write a book about growing up with disabilities.
Where There’s a Will, There’s a Way by Heather Y
September 25th is designated International Ataxia Awareness Day (IAAD). For those of you unfamiliar with the different types of the word Ataxia it is not a specific diagnosis, but rather a group of related symptoms (i.e. tremor, in coordination, etc.) characteristic of an underlying disorder whether hereditary (i.e. Freidrich’s Ataxia) or acquired as a symptom(s) of an underlying disorder. IAAD is an opportunity for the Ataxia community to spread awareness and I would like to share a personal experience. It was a crisp fall day, and I had decided to take the dog out before it rained. The sky was a bit overcast, but the weather forecast was for showers in the late afternoon. It was only 11:00 AM, but I donned my floppy purple hat and sunglasses, anyway. I opened the screen door and bounded out onto the porch, as the door slammed shut behind me. I never gave it a second thought, that is, until I discovered I was locked outside of the house. Oh, no! I pulled on the door handle, but it wouldn’t budge. My mind raced for a simple solution, but I had to admit that there was none. The dog made her usual rounds through the yard, and then she stopped and looked over at me. Even she knew that something was wrong. How am I going to get back in the house? I wondered. I needed to call for or help, but whom? There were some neighbors who might be home, but their house was on the other side of the fence. I have a severe balance problem, and I wasn’t about to attempt to climb the chain link. There are reports of people getting hung on wire fences, Still, I had to get back inside! The cats were in there, and one of them was very, very sick. My mind raced, again, as I glanced at the padlock on the gate. Could I get through it without letting the dog out? The animals were my responsibility and my biggest concern. It never occurred to me that I could get hurt, but there was another neighbor who might be able to help me. Carefully, I leaned on the gate and undid the padlock. Checking to make sure the dog was preoccupied on the other side of the yard, I eased open the gate door and slowly lowered myself until I was sitting on the top step. My joints are always locking up on me, but once I had scooted down those steps I stood erect without even giving my “tricky” equilibrium a second thought. I walked straight across the driveway, down the bank, across the next driveway, up over that embankment and down the uneven hill to the neighbor’s porch (All this without the usual staggering often confused as drunkenness).up the steps, and rang the doorbell. What a relief that someone was home! I asked to use the phone and was told that help would arrive within twenty minutes! That was a lesson to me to check the door latch before going outside.
A Story about CCHS (Diaphragm Pacing) – Children’s Hospital Los Angeles
A personal blog
Maisie, who turns three on October 23, has been at London’s Great Ormond Street so long that staff held a going-home party. Maisie will leave the hospital with her family on Monday.
Ward manager Kate Harkus said: “It means a lot to the staff that she’s going home. We feel very proud. We’ve nursed her through rocky times.
“There are very few machines in the world that will be able to support her at home. Technology is advancing so much that more companies are coming out with these ventilators that you can manage at home.”
Maisie’s parents have mostly been living in hospital accommodation ever since she was transferred to Great Ormond Street from Medway Maritime Hospital when she was three months old.
Her father Andrew Harris explained : “It’s been difficult. She was in intensive care going backwards and forwards.
The Cobh toddler who has only spent a few nights at home since she was born almost two years ago is finally home with her delighted family.
Kate Flynn, who will be two next month, spent a number of nights at her Cobh home with her parents Mark and Lisa and brothers Adam and Alex in recent weeks.
And now to everyone’s joy she is at home full time, with support and care from a home nursing team set in place to cope with Kate’s needs.
Her thrilled father Mark said: “We are over the moon. We can scarcely believe its true. It will have a huge beneficial impact on all our lives, primarily that it will no longer revolve around a hospital setting but now a family home environment, the way it should be. Kate is so amazing and makes us so proud every day.”
Little Kate, who wasborn in June 2013 by emergency C-section at CUMH, needs a ventilator to survive and also has a tracheostomy. She spends between just two and three hours a day off the ventilator. She is fed through a peg because she has difficulty in swallowing. Kate was born in June 2013 by emergency C-section at Cork University Maternity Hospital.Within hours of her birth, she was transferred to Our Lady’s Hospital for Sick Children in Crumlin because she had immediate breathing problems. She has had dozens of episodes in her short life in which she has stopped breathing and needed resuscitation
Her parents, are now awaiting the results of tests to establish if she has a genetic condition.
Caption: Baby Kate with her brothers Alex and Adam and parents Mark and Lisa. Picture: Larry Cummins
forwards. Now she’s ready to go home it’s all been worth it.
“I’m looking forward to seeing her go to school and growing up. We didn’t think she’d get to this stage.”