Dan’s daily life



It has been fifteen years since my son Daniel’s diagnosis of Ataxia-Telangiectasia.

Dan’s day typically starts with coughing.  He coughs on and off over night and his cough is relentless throughout the day.  Dan requires help to get out of bed each morning.  He needs assistance to sit on the edge of the bed to do a pivot transfer into his power wheelchair. When we get to the bathroom he again needs assistance to get to the toilet. When he is done I help him transfer back to his powerchair and get dressed.

We next move down to the den where I help Dan transfer to a comfortable chair in front of the television.  His respiratory treatments will take an hour, sometimes longer.  They start with a treatment that requires him to wear a nose plug and hold a mouthpiece with his teeth as medicated air is rhythmically pulsed into his lungs at 11 breaths per minute.  I perch on the arm of the chair he sits in and hold his cheeks in to minimize any loss of air flow.  He needs every drop of medication for his lung disease, another part of having A-T.  Depending on the month, he then has 2-3 nebulizer treatments which can take anywhere from 30 minutes to an hour to finish. He coughs on and off through all of this.  According to his pulmonologist, Dan has asthma,  chronic bronchitis (inflammation of his lungs) and emphysema (destruction of his alveoli), which together represent Chronic Obstructive Pulmonary Disease.  The respiratory infections that started before he was even diagnosed with A-T have taken their toll, despite frequent, prolonged hospitalizations and antibiotics.  When his respiratory treatments are finally done, he takes his pills with my help, I help him transfer to his powerchair again and he heads out for his hour-long bus ride to school.

Dan has more respiratory treatments at school, and at times requires extra fluid or feeding to be given through the j-tube in his stomach.  His physicians call his eating, “quality of life eating” because he cannot eat enough to sustain himself.  That is why he has the feeding tube in his stomach.  He eats lunch with assistance, and must have a scribe to do any writing during his classes. He also requires help anytime he needs to get into or out of his powerchair during the school day.  When school is over he has another hour on the bus to get home.

Dan has about sixty minutes to watch television, play video games or create art on the computer before his respiratory treatments begin again, and they must be repeated before he goes to bed. Dan suffers from a deep fatigue which comes from having to struggle to do much of anything. Moving, breathing, eating and even thinking require time, patience and sustained effort.  His constant cough also wears him out.  He is acutely aware of the difference between his life and that of his siblings; his 20-year-old brother who is away at college and has a girlfriend, his 16-year-old sister who is in high school, plays three instruments and loves marching band.  He feels the pain of being different.

The last time we were in the hospital Dan told me he wasn’t sure he wanted to go on if he became really sick again.  It was all too much – the constant respiratory treatments, IV’s, pills, time on the ventilator, time away from home in the hospital.  We cried together in witness to all he has been through.  Then life went on, as it does.

Dan used to run across the grass, laughing, with his brother and sister.  He used to climb on the monkey bars at the park.  He walked holding my hand.  The physicians who diagnosed him prepared me for his death, for the big loss.  They did not prepare me, nor could they prepare him, for the slow, incessant progression of his disease.

When he is in bed, at the end of a long day, I sit next to him and we talk.  Sometimes we hold hands in the glow from his feeding pump, which hums as it pumps the feeding into his stomach. At times he shares his frustrations with his life, at others he is too tired for much talking.  Before leaving his room I say, “I love you Dan, have a good rest. I’ll see you in the morning.”  And he replies, “I love you too Mom, I’ll see you in the morning.”


Anxious by nature, my thoughts tend to run rampant through an overstimulated nervous system.  My nights are full of images, worries, replays of the days events.  Sleep is peppered with hours of laying awake, ruminating over the past and future.  Last night I chased after memories, nervously pursuing them through the dark.  The more frantic my attempts to recall them, the more elusive they became.  My father died after years of dementia.  When it first started he told my sister, “Something is stealing my memories.”  That statement haunts me, frightens me.  Like my father in so many ways, I wonder how much of my forgetting is age and how much might be a foreshadowing.

Memory is a trickster, a friend, a teacher.  It comforts, chides, runs away laughing as my empty hands reach out for it.  Through the soft, dark folds of my mind I reach out, feeling for the texture of it.  There are so many convolutions, so many dead ends.  A complex labyrinth of thoughts and emotions that ignite a web of neurons, each  with an intricate connection to another.  I get lost easily in the stories there and wonder at the enormity of each constellation of stored experience.  It is frightening as the wiring begins to fail and the lights begin to wink out, one by one.

The difference a year makes

I’m running for TeamDan (www.atcp.org/TeamDan).  When Daniel was 3 years-old and first diagnosed with Ataxia-Telangiectasia it didn’t sound like we’d have very much time.  We were told that we would lose Dan in his teens, maybe in his twenties if we were lucky.  He’s still with us for now, and I’m running to help keep him here with us longer.

Soon after Daniel was diagnosed I learned about the ATCP marathon at DisneyWorld.  I wanted to do it immediately.  My kids were young though, and six months after Dan was diagnosed with his fatal condition I was diagnosed with fibromyaligia.  The physical pain I’d been feeling for months had a name but not a real treatment.  Many physicians didn’t recognize it as a “real” diagnosis.  It was certainly real to me.

This is about Dan though, not me.  Daniel has been in so many hospitals, has suffered many losses and has been resilient through so much.  I am uncomfortable asking for money.  I’m not a sales or marketing person.  Dan faces obstacles everyday that he conquers with grace at times and irritation at others.  I’m asking for your support.  As any mother knows, I would run until my heart stopped for my children.

The fact is that research on Ataxia-Telangiectasia benefits more than just Dan and other kids with A-T.  It will also lead to treatments for other neurodegenerative conditions.  Our DNA is very complex and we know so little about it.  I’m just one person, and so is my sweet son Daniel, but we are asking for your support.  Our link is: http://www.atcp.org/TeamDan.  Thanks in advance for any help you can give.  I am grateful for each day Dan and I have together.  While he can’t walk or run, I am thankful beyond measure that even with the pain that accompanies me each step, I can run for him.  Blessings and peace to each of you.