Together for Teddy - Support for the McKendalls

On August 12, 2022, Theodore “Teddy” McKendall joined our world with an irresistible smile sure to make your heart melt. Aside from being deemed their barnacle baby due to his constant requests to be held, adjusting to life with two kids under two felt blissful and natural - Michele, Alex, and big brother Harrison were beaming with love for their newest family member.

When Teddy was around two months old, he began presenting signs of epilepsy and ended up spending 62 days in the PICU at Hasbro Children’s Hospital. Ultimately, he would be diagnosed with a mutation on the KCNT1 gene, associated with epilepsy of infancy with migrating focal seizures (KCNT1 EIMFS). (https://kcnt1epilepsy.org/)

This is an ultra-rare mutation only just discovered in 2012. It is an intractable (drug-resistant) migrating focal epilepsy of infancy, which means the usual drugs will not stop Teddy’s seizures and his seizures will change in their presentation because they move throughout the brain. There is currently no known cure.

The family is finally home from the hospital, but the journey absolutely does not stop here. Teddy requires around-the-clock monitoring (someone by his bedside at all times), as he continues to have multiple seizures a day and medication every 2-4 hours.

Teddy remains on oxygen and has a feeding tube to help administer medications and his keto diet if he’s too sleepy to eat. After being on sedatives and other anti-seizure medication and sleeping for a large part of his hospital stay, he has regressed to what he was like as a newborn with very little muscle tone. His parents haven’t seen him smile (except for in his dreams) or heard those sweet baby coos in months. Teddy will continue to require regular physical therapy, introducing occupational therapy and speech therapy in the future. The smallest movements that would seem natural to babies are considered major milestones for Teddy and worthy of celebration, which we are happy to oblige!

On top of all of the emotional burden this journey has brought to the family, they are undoubtedly going to need support from all of their loved ones. With Alex taking on the role of Teddy’s full-time primary caregiver, they have quickly become a single-income household. Expected expenses continue to roll in and the additional financial aspects that come along with the introduction of Teddy’s special needs and requirements are building. Fortunately, Michele has full support from her workplace. She is able to work from home for now and be present as much as possible - even if it means sneaking work hours while everyone is asleep.

What they need right now:

Help! They are currently on a waitlist for a full-time nurse to come to the house to care for Teddy which required applying for a special Medicaid for kids with disabilities to cover the cost. Unfortunately, there is a massive shortage of nurses in the homecare sector and they could be on a waitlist for months. There are no other programs available for caring for medically complex children in the home, so Michele and Alex will likely need to pay someone out of pocket to care for Teddy.

Alex and Michele are working so hard to provide a normal home environment for their boys, even with a mini hospital room now in their house. Harrison spends a lot of time kissing his baby brother, sharing his trucks, reading with him, and laying on his mat with him. We know he will continue to be his best friend and biggest champion.

As it stands now Teddy’s future is completely unknown. What we do know is that his future is full of hope. Hope that Teddy’s medicine regimen with the keto diet will continue to help him improve and his seizures will continue to decrease in frequency and intensity. Hope that this will allow him the strength and time to develop and reach his milestones, although delayed. It’s difficult to predict because every child with this disease presents differently and responds differently to treatment. Hope for scientific progression. Hope for jumping in puddles with his big brother Harrison. Hope for miracles.

They encounter new obstacles in every day that passes and will continue to do so as they learn more about giving Teddy every opportunity to thrive. If there is anything we can do as their community of support to alleviate the stressors - whether it be financially or emotionally - please come together for Teddy to do so.

If you’re interested in learning more about Teddy’s story, here is a little backstory of his journey over the past few months:

The journey to diagnosis: Two months after they brought Teddy home from the hospital, his story took a pivot. Michele and Alex started noticing his right leg would twitch occasionally. They kept an eye on it but didn’t think it was too unusual until the one leg twitching turned into two legs twitching. Teddy had a few scary episodes that ultimately brought them to the ER at the end of October. Until doctors finally witnessed one of the more severe episodes, most were certain it was just normal infantile twitching based on the descriptions. After an EEG and a few nights spent in the ER, Teddy was diagnosed with epilepsy and sent home with an antiepileptic medication.

Teddy did well for a few weeks but then began having new, more intense episodes. The doctors told them that people *typically* really have one type of seizure, so it could just be his reflux acting up. Trusting their instincts, Alex and Michele didn’t ignore the gut feeling they had and rushed Teddy back to the ER for another EEG. He was in fact having seizure activity in a different presentation than originally expected. They spent another few nights at Hasbro Children’s Hospital, more antiepileptic drugs were added to Teddy’s regimen, and genetic testing was finally sent out.

Teddy was only home again for 10 days before he returned to the hospital for a third time due to progressively aggressive and even more terrifying seizures - he began holding his breath during each episode. During this visit, they were transferred from the ER and finally admitted into the Pediatric Intensive Care Unit at Hasbro in Providence RI, which was both a blessing and a curse. The blessing was the truly amazing care of the nursing staff, the guidance and support of the residents, attendings, and other PICU doctors, and the unmatched expertise from the numerous specialists from neurology, GI, cardio, etc., the CHIPS team, and all the other wonderful staff at Hasbro. The curse was their extended 62-day long stay in the PICU and all of the unimaginable battles they endured throughout.

The Diagnosis: During the first week of their stay, Teddy’s genetic results came back. He has a mutation on the KCNT1 gene, associated with epilepsy of infancy with migrating focal seizures (KCNT1 EIMFS). (https://kcnt1epilepsy.org/)

This is an ultra-rare mutation only just discovered in 2012. It is an intractable (drug-resistant) migrating focal epilepsy of infancy, which means the usual drugs will not stop Teddy’s seizures and his seizures will change in their presentation because they move throughout the brain. Their doctors have never seen or treated a case but have spent every day since his diagnosis working towards finding a cure for Teddy.

While they were relieved to finally have a diagnosis, it was also overwhelmingly devastating and heartbreaking to process the reality of their baby’s future. A future that the medical experts are still trying to figure out. Every day was filled with new forms of heartbreak as Alex and Michele (and their families) witnessed their son suffer through sometimes violent seizures during which he would hold his breath until turning blue, over and over again. Teddy was on multiple anti-seizure medications, but the clusters of seizures could sometimes only be stopped by administering a sedative… and sometimes nothing would stop them. He progressively got worse in the PICU while they trialed different medications. As parents, Alex and Michele felt totally helpless.

Though being at the hospital surrounded by the amazing PICU team provided a sense of security, it was extremely difficult to adjust to this “new normal” with Harrison, Teddy’s 2.5 year old brother, at home.

For 62 days straight, Alex dedicated every moment to being by Teddy’s bedside - caring for him during his seizures, studying and learning every tiny move and quirk, and doing anything he could to help alleviate Teddy’s discomfort. Michele traveled to and from the hospital almost every day to snuggle and love on their sweet baby boy, giving Alex brief stints of rest. Family and friends chipped in to care for Harrison and keep things as “normal” as we could. One of the toughest hurdles was trying to explain to Harrison why Mommy and Daddy had to be with Teddy and why he wasn’t part of it. The newest family of four had to spend Christmas separated from each other, but we hope the love (and toys) might have distracted Harrison enough not to notice the abnormality of it all.

After consulting with neurologists from around the country, Teddy’s team started him on quinidine, traditionally a heart medication that targets the potassium channels that KCNT1 controls, and the ketogenic diet. There were major risks associated with this drug, so a slow introduction with close monitoring was required. Teddy is the only person in the entire state receiving this medication. Teddy slowly improved at the hospital, with multiple setbacks, but finally reached a status that was stable enough to go home at the beginning of February.