ABOUT MILES

Miles is a very special kindergartner who lives in York, Maine. His name, Miles Julian, means “beautiful soldier,” which has proven to be a more perfect moniker than we ever could have imagined as his parents. With profound physical and intellectual disabilities, little Miles and we as his family face enormous challenges every day, trying to give him the life that every child–every person–deserves.

As an infant, Miles was diagnosed with Down syndrome, but sadly, not until five weeks of age. We were shocked and shattered at this unreal late postnatal diagnosis: a spiraling nightmare of my getting the news over the phone while home alone, my then having to somehow tell Stephen over the phone, and us later having to figure out together how to tell both sets of grandparents as our incomprehensible new reality set in. Miles was our first child and also the first grandchild on both sides of the family, and we had had every reason to believe he was healthy after those first happy weeks at home. That time was a brick wall of lost dreams followed by a daze of bottomless grief. Stephen and I vowed that Miles would be one of the exceptions and grow to be high-functioning; in fact, that idea became our comfort.

Less than four months later, I noticed strange eye deviations early one Thursday morning while nursing Miles. I knew there was some sort of neurological threat going on. Those damned blips increased and continued for days until, crying, we brought Miles to Children’s Hospital Boston, desperate for (but also terrified of) the answers. What we found out was that Miles had infantile spasms (www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/), a devastating seizure disorder considered to be the most difficult pediatric neurological condition that exists. In fact, infantile spasms is also referred to as a “catastrophic epilepsy of childhood.” Although we had no understanding of it–I still remember asking whether my son’s having seizures meant he had epilepsy–he was started post-haste on high doses of the steroid ACTH, which caused a terrifying GI bleed. And which he ultimately failed anyway.

We fought for Miles’ cognitive life for the next four years, bringing him down to Boston to get him the best specialized care. Our approach to choosing each next anti-epileptic drug for him was frighteningly uninformed, with scant clinical information to go by. Stephen and I each saw Miles and his terrible infantile spasms differently, and getting on the same page about his care was often nearly impossible. We slowly titrated doses of a new med up, often hated the side effects, and then had to decide together whether to continue on to a therapeutic dose to know if it might actually control his seizures. Rarely were we in agreement, as is so often the case with parents in this terrible trap. Generally speaking, I wanted to see a drug trial through, and Stephen wanted his boy “off that med.” The irony that we could not see at the time was that we were both trying in our own way to protect our son, above all else. We started couple’s therapy for so many reasons, but mostly to learn the tools for our day-to-day survival and compromises for the awful decisions–and, yes, oftentimes guesses–we had to make for Miles’ future.

When Miles was just ten months of age, we decided we had to initiate him on the Ketogenic Diet (www.charliefoundation.org), a still-misunderstood but largely effective dietary treatment for pediatric epilepsy. Desperate to rid him of his infantile spasms, I was forced to choose between continued breastfeeding and this dietary seizure treatment. This was particularly hard because my time nursing Miles was my only feeling of normalcy: when we could just be Mommy and Baby in any given day. (Miles was, in fact, the youngest patient ever started on the Keto Diet at MGH, and he paved the way for other infants to do the same.) Thankfully, the Diet reduced Miles’ spasms by at least fifty percent. We were buoyed by this news. But, unfortunately, we had still not achieved the necessary goal of completely ridding him of those seizures to protect him from severe regression and profound intellectual disability. So the battle continued on and on, because even the few-and-far-between positive results we achieved for Miles were never quite good enough.

We continued trialing drug after drug for Miles’ seizures, with still more failures and sometimes-scary side effects. Each new med attempt took months and months from start to finish, and caused tremendous strife between his dad and me. Meanwhile Miles’ skills as an infant were disappearing. We were losing our son in front of our eyes, despite our fighting with everything we had and doing everything right.

These devastating seizures stole all of Miles’ skills from him, and all of our hope with it. He became medically fragile, spending much of his time in Boston hospitals with us at his side. Losing neurological function is the start of a very slippery slope. At just 11 months of age, Miles’ raging seizures created a swallow dysfunction, and he was suddenly required to become exclusively tube-fed, which continues to this day. What more could be taken from our son?? He lost even the ability to smile, sealing our heartbreak.

When Miles was two, he was overwhelmed during yet another fight in the hospital with a pneumonia in his lungs, and we suddenly found our son needing more than the usual oxygen in the hospital. Transferred to the PICU while at MassGeneral Hospital, he was put on a ventilator and large doses of benzodiazepines to force a coma. For seven long weeks Miles was completely reliant on the vent to do his breathing for him, and completely unconscious. We lived at the hospital with him and went home for weekend respite when he was stable. Several times the medical staff would crowd around him as his oxygen saturation plummeted, and we would watch, terrified and helpless. Slowly, finally, as winter melted away, Miles got healthy, the heavy meds were slowly removed, one by one. He was finally able to be extubated, a frightening but amazing experience that was somehow like watching someone being born, or reborn. Emotionally we needed to bring our boy home, but instead agreed to spend the next five weeks at acute rehabilitation with him. The facility was, ironically, back in Brighton, where Stephen and I had first met and lived together, but the carefree memories it stirred felt like someone else’s life. Coming home to our beloved Maine finally as a threesome was a joyous, if eerie, event. I remember well the feeling of wanting to kiss our living room floor. We had called the ambulance the last day of February and brought Miles (and our suitcases) home in mid-June.

The intense and endless struggles for us as new parents to a profoundly disabled child continued. Miles developed a second seizure type. He broke three long bones within two years, including the right femur twice, as a result of a “perfect storm” of med side effects and a lack of weight-bearing. He simply did not have the physical strength to bear weight, which is critical to bone health. The Topamax combined with the Ketogenic Diet, two of the few seizure treatments that ever worked for Miles, had also likely caused substantial weakening of his small bones, but it was just another example of the terrible tradeoffs we had been forced to make. We felt ashamed that we hadn’t known about the humerus break until a chest x-ray for possible pneumonia a month later. Everything for Miles’ health was becoming a Catch-22; everything pointed to a worst-case scenario for him.

Stephen and I persisted through the daze of sadness and treatments and total care requirements for Miles. Therapies of all types every week. Pushing the envelope to try to get Miles stronger, surrounded by a minefield of limitations for him. Whatever we could do to strengthen him physically, and strengthen ourselves emotionally, we did. Many days, it wasn’t much.

The only thing we knew during those dark days was that we loved our angelic son.

Then, at around four years of age, something happened for Miles. The careful med cocktail that his esteemed epileptologist, Dr. Elizabeth Thiele of MGH, had patiently constructed for him clicked into place. We watched him like hawks and counted the decreasing spasms each day, holding our breaths as we had so many times before for years, but fully accustomed to seeing them come right back. Finally, weeks later, we got our “clinical” confirmation: his seizures were now controlled. We waited for them to come back like they always did. But, somehow, they didn’t. There aren’t words to describe how badly Miles needed that, and how badly we needed it as his battle-weary parents. And, nine months after a positive pregnancy test in the bathroom of Miles’ inpatient hospital room, there was a baby brother now. We needed positive change, and for things to somehow get easier as we bravely continued with our original family plan of more than one child. It was an impossible dream, but yet somehow, very subtly at first, that is when things started to gradually shift for Miles and for us as a family.

The last two years have been nothing short of a divine intervention. We proved that Miles had outgrown his infantile spasms only by successfully weaning that drug on the second attempt. That was an important victory, although by that time a tremendous amount of neurological insult, with unknown future ramifications, had already been inflicted on our son. Still, we celebrated the killing of our Wicked Witch with hard-to-express relief. We have since weaned another anti-epileptic. Each time we can successfully remove a med, Miles has an awakening and gets exponentially stronger. The biggest gift, perhaps, was that Miles returned to smiling again, and even belly laughing. Don’t get us wrong: Miles’ challenges remain overwhelming, his abilities few. But his victories send us sky-high with joy. The idea that he can actually start to learn is foreign and hard to trust. But he’s slowly showing us that there is a little person with desires and opinions and interests inside that precious little body. Amazingly, Miles is now able to start to learn to walk for the first time, and to slowly relearn how to eat by mouth. Mind you, it is very, very slow. But he is finally getting some breaks, and his every new accomplishment is a little miracle.

So now we are reaching out to others, ready to tell Miles’ story and to ask for help to get him something he badly needs that is beyond our usual means. His current size requires that he have an adaptive van with a lowered floor and an automatic ramp so that he can travel with us, get to his therapies, and be included. He has outgrown his current manual ramp-equipped van, which we have had for the last four years, and it is now a safety issue. As we work to raise $40K to get this sweet boy his much-needed van for a “Christmas in July,” will you please help Miles by making a donation?

Thank you for helping us to help our beautiful soldier.