In many ways, Beth Bischoff-Taylor is like any other mom of a young child. She shares lots of pictures and videos of her son, Miles, on Facebook. She excitedly trumpets his milestones and achievements. She wakes up extra early to get to the gym before his day begins. She is busy, busy, busy, struggling to fit in a lunch date with a friend or a Target run.
Here are a few of the ways Beth is different from most moms:
*She and Miles met President Barack Obama – who chatted with them and insisted on giving her a hug.
*She spends many of her days at the hospital awaiting doctors and treatments.
*She has known, for most of her son’s life, that he was expected to die by age 3.
Miles has Menkes disease, a rare syndrome that causes a copper deficiency in the body. This shortage has devastating consequences: developmental delays, failure to thrive, seizures leading to brain damage. And a typical life expectancy of three years or less.
Miles just turned 6.
Before Miles was born, Beth had no idea what was in store for her son and her family. But she was nervous. Two pregnancies had ended in tragedy – a stillborn son and a premature daughter who didn’t survive. But her pregnancy with Miles went smoothly, and when he was born, he seemed perfect.
Three days in, there were a couple of slightly unusual symptoms. Beth told us about the nurse visit she received on that day: “Miles’ body temp was on the low side, and his blood pressure was low as well. We headed to the ER at Children’s Hospital Colorado, where Miles stayed for two days in the NICU under the giraffe warmer and having some tests done. Everything showed normal and negative. We came to the conclusion that Miles just needed to pack on some weight to keep him warm. He was a little guy.”
Four months later, Miles’ condition quickly changed from slightly off to extremely bad. Beth described it: “Miles was unresponsive. … To us, he looked like he was staring off.” But his pediatrician noticed that his eyes were not fixed but were ticking slightly back and forth. This was a sign that he was, in fact, in a “constant clinical seizure state” and needed to be rushed to the hospital. There, Beth and her husband, Jonathan, learned that Miles has Menkes. Doctors didn’t expect that he’d live out the weekend in the hospital.
But Miles did what he would continue to do for the next five-plus years: He defied expectations and fought for his life. He made it through the weekend, and as his condition stabilized, the reality of their life began. That reality is, as Beth puts it, “Tests and monitors and poking and prodding. Therapies, counselors, palliative care programs.” It’s emergency trips to the intensive care unit, any one of which could end in tragedy. It’s living with the knowledge that her son is very unlikely to see adulthood.
Beth quit her job and began to devote all of her time to fulfilling the promise she made him that first weekend in the hospital: “I promised him during that initial hospital stay that I would never let him have a day not surrounded in love.”
The truth is that Beth probably couldn’t have continued to work while caring for Miles – or, if she did, it would have been her husband who had to give up his career. Caring for a child with Menkes is a full-time job for those who don’t seek out help from respite programs. Beth is back and forth to the hospital for Miles’ many treatments, and when she’s home with him, she’s responsible for care including “feeding tubes, medications, urinary catheterization, suctioning mucus …” And she is determined that all the while, Miles knows he is deeply loved and is so much more than his diagnosis.
That’s not always an easy wish to fulfill in a world that is squeamish about disease and uncomfortable with difference. Beth has seen dramatic changes in the way people treat her and Miles, even those who were formerly close friends. “Both friends and family that have been around for decades are suddenly nowhere to be found, or they never ask about Miles – as if he doesn’t exist or they believe he’s a drain on society.” Jonathan, Miles’ dad, has found the same thing among his friends: “A good 50 percent of the people in his life can’t acknowledge Miles. Don’t look at him, ask about him. He basically doesn’t exist.”
It’s a frustrating phenomenon for parents who know their child is just as special and deserving of love as any other. She gets it: “I suppose not everyone knows how to deal with someone in Miles’ situation.” Getting it doesn’t make it any easier, though. She wishes more people understood the reality of Miles at 6 years old. “I assure you … he IS a person. He HAS feelings, and there is a lot more going on in his little head than I think we all realize. I’ve always talked to Miles age appropriately, and that is starting to shine through.”
But then there are other friends and loved ones who have stepped up, and Beth leans on them to be there for her and to help raise awareness of Miles’ condition. “With the help of social media, even high school acquaintances have now become huge advocates and great friends. Our previous friend circle has grown smaller, but now larger with the amount of amazing and loving people that just seemed like acquaintances prior and great friends we’ve met since.”
What she wants from friends is simple: “Just being there. Being there, whether it’s to talk about Miles, stressors, or to just talk about the last episode of our favorite television show.” She might not be able to get together for that girls’ getaway weekend or movie night, but the support of her friends is crucial to her own mental health. “Those people who are there to talk and just hang out with make life seem a little more ‘normal’ – not so ‘medical.’”
Some of those friends are other parents of children with Menkes. It’s a small group but one that is hugely supportive – after all, they’re in this thing together. In Colorado, where Beth, Jonathan, and Miles live, there’s just one other child with Menkes. But Beth and his mom get together when they can to share lunch and take a break from nonstop caregiving.
It’s one of the few opportunities Beth gets for self-care, and as important as she knows it is, she’s not too apologetic about not making more time for herself. It took her, she says, five years to convince herself that she should step away for an hour each day – at 5 a.m. – to work out at the gym. She justifies it to herself as being in Miles’ best interest: “Miles gets heavier and heavier, and I have every intention of carrying him around until he’s 105 years old.”
In addition to the time she spends caring for Miles, Beth finds opportunities to be a fierce advocate for Menkes awareness. When Menkes is caught early, treatments are much more likely to be effective. The problem is that it’s such a rare disease that very few people know about it – and that means they don’t make the connections between the symptoms and Menkes.
Miles’ low body temperature and low blood pressure were two symptoms of Menkes. Beth knew about these symptoms in Miles’ first days of life – a crucial time for infants with Menkes – but she didn’t know how problematic they were or what they were a sign of, and neither did her care team. Other symptoms include, according to Beth, “brittle, kinky or colorless hair. Hypothermia, low birth weight, chubby rosy cheeks, and pale complexion. Low muscle tone and difficulties feeding. Most of them also have an ‘old man’ look to them at birth. Like baggy, wrinkly skin.”
If these symptoms are caught and the copper deficiency is treated very early – within the first 10 days of life – much of the damage caused by Menkes can be mitigated. The seizures can be prevented, and with them the brain damage they cause. But an understanding of Menkes treatment is still young, and the oldest child who received early treatment just turned 21.
Beth’s crusade to raise awareness of Menkes brought her to a 2011 campaign event for President Obama. Jonathan had written to several candidates that election season, asking how “families like ours would be affected if they were to win the election.” Obama’s camp was the only one to respond, and they invited Beth and Miles to their event, where she had a chance to meet, chat with, and hug the president. What she told him was how crucial it is that funding continues for the National Institutes of Health, so that research into diseases like Menkes doesn’t stall. He assured her that he would never cut funding to the NIH – and he stuck by that promise. It’s an issue that remains important to Beth.
But even as she spreads awareness via Miles’ website and Facebook page, Beth spends the majority of her time caring for Miles – and loving him. The experience has changed her for the better, she believes. “Although before Miles I always felt like I was very sensitive or empathetic to other people’s situations, I believe Miles has pulled that closer to the surface. … Years ago (Jonathan and I) both took care of developmentally disabled adults, so we’ve had a taste of this life, but never to this degree. We’ve always had that need to take care of others, which just warmed us up for Miles.”
Beth is hyperaware that Miles has greatly exceeded his life expectancy. How could she forget? But she doesn’t let the idea of his death hang over her head. She finds positivity to be a healthy choice for herself and for Miles, too. “I’m a true believer in the idea that the energy you put out comes back to you trifold. I can’t help but think that has some impact on Miles’ health and the fact that he’s beyond his life expectancy. I’ve seen my share of parents giving up on their children and they always seemed to have health issues. Very few stretches of healthy days.”
When talking to other area parents whose children have Menkes – the hospital refers them to her upon diagnosis for support – she makes sure to encourage them to stay positive, just as she does. “The first thing I always tell them is advice I was given early on after Miles’ diagnosis. ‘Do not mourn Miles before he’s gone.’”