We have never felt fear like this. Our hearts are racing and it is taking every ounce of our strength to fight back the dam of tears that is just waiting to burst. But Hudson needs us to be strong. He is counting on his mama and daddy to be waiting for him with smiles and comforting words when he finally breaks free from his seizure. In his mere 15 months on this Earth, Hudson has endured over 500 seizures, which caused a small stroke in his brain when he was only a couple of weeks old. He has tolerated countless blood draws, spinal taps, EEGs, MRIs, X-rays, ultrasounds, and pretty much any medical procedure his condition has called for. At only two months old, Hudson was diagnosed with a rare genetic mutation in the sodium channel in his brain called SCN2A. Hudson spent the first 32 days of his life in the Neonatal Intensive Care Unit (NICU) at Tufts Medical Center in Boston. During that time, his medical team tried numerous medications and treatments, all to no avail. At only three weeks old, we were told there was nothing more that could be done to stop or prevent Hudson’s seizures. Palliative care and the hospital chaplain made their way into Hudson’s hospital room, but we quickly turned them away. Even though we didn’t have a diagnosis yet, we refused to give up on our boy.
The very next day, a different neurologist arrived and suggested we try a different medication. We were very skeptical, as nothing we had tried up to this point had seemed to make any difference. But alas, after his first dose of Dilantin, Hudson went 24 hours without a seizure! It took some time to find the right dose, and it’s still a struggle to maintain a therapeutic level as babies grow so quickly and metabolize medication differently than adults. Still, to this day, it has been the only medication that has been effective.
Since his release from the NICU, Hudson has been hospitalized several times. His condition is quite temperamental, and can be triggered by something as “simple” as a common cold or ear infection.
Each time Hudson has a seizure, it sets him back developmentally. He is not yet able to sit up or roll over, and does not reach for or grab things. He does physical and occupational therapy weekly, which is provided through Early Intervention and the Kennedy Donovan Center. He will soon begin wearing a brace to aid him in sitting straight. The stroke he experienced as a newborn has left scarring on his brain that doctors believe is directly related to his lack of motor skills. Still, he perseveres. He works so hard every single day to do all of the things that we were told he never would.
Right in the wake of Hudson’s last hospitalization in July of 2019, my husband Seth’s back gave out. Over two decades of being a commercial scallop fisherman, followed by running a tree company, had caused severe damage to his spinal cord and lower back. He had surgery on his spinal cord in August, and will need a second surgery to correct the problems with his lower back before the New Year.
All the planning for a family, saving our money, holding multiple jobs – it has all evaporated. While Mass Health and disability insurance for our son have been financial lifesavers, there are still days when staring at our bottom line is terrifying. We are still battling to receive disability for my husband, who has already been denied twice.
Because Seth cannot physically care for our son, I had to forego the part time job I previously held within walking distance of our house. While the 60+ days Hudson has spent at Tufts have been covered by insurance, as are most of his treatments and therapies, there are still round trips to Boston as well as doctor’s offices here on the Cape that we have to finance. Lower Cape Outreach Council (LCOC) has been generous enough to provide us with gas for our vehicle when we did not have the funds.
That’s not all. In the spring, they provided us with a $600 check to go towards rent, and recently helped us with another $500. Our landlord has been extremely understanding and patient, but with minimal income, $1,175 a month adds up quickly.
Gennie Moran, chief operating officer at LCOC, has made it her mission to help our family from the moment we first spoke over the phone. She has always taken the time to listen, despite the thousands of other families in need that benefit from nearly $1.4 million in direct financial assistance each year.
Fortunately, LCOC’s friendship has extended beyond gas money and rent assistance. Gennie and her staff have truly been a support system for us. They helped arrange for emergency food stamps and cash assistance, as well as introducing us to the Family Pantry in Harwich, where we shop twice a month. It’s an awesome resource that also has a clothing boutique.
LCOC even helped us with our two dogs by referring us to the Chatham Dog Club, which provided food for them when we did not have the means to do so.
More recently, LCOC helped us to catch up on our utility bills. This has been a huge blessing, especially with the weather changing so rapidly. Gennie even ordered Hudson a pair of winter shoes from Amazon to ensure his little feet would stay warm this winter!
Their continued support has allowed us to focus on our biggest priority: our son. As a parent, you must do more than nurture. You must educate yourself in order to be your child’s best advocate.
Today, Hudson is the happiest baby you will ever meet. He greets everyone with a smile and loves meeting new people. While we have no idea what the future holds for our boy, we do know, without a doubt, that we will be here by his side – every baby step of the way!
And we also know that if it gets too overwhelming, and we come up short yet again, we can always call Gennie at LCOC.
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