Griffin, a vibrant 3-year-old from Delaware, was diagnosed with Optic Nerve Hypoplasia (ONH) and a host of other complex conditions when he was just four months old. His parents, alarmed by his lack of visual tracking and eye shuddering, sought help from their primary care pediatrician at Nemours Children’s Health in Middletown. This led them to our Wilmington hospital, where an ophthalmologist confirmed Griffin’s blindness due to ONH. An MRI revealed further complications: “He was missing his bright spot (the posterior part of his pituitary gland), and he had polymicrogyria over the majority of his brain, so the likelihood of epilepsy was not if, but rather when. He also had aqueductal stenosis. After hearing all of these complications, we were guided to meet with endocrinology and neurosurgery to monitor him, and we were obviously closely followed by neurology,” says Griffin’s mom, Bernadette.
Life before treatment at Nemours Children’s was filled with uncertainty. “Griffin was having around 100 infantile spasms a day starting when he was around nine months old. We basically had to hold him to keep him safe all day long, as his body would just completely flop when he had a seizure. He also was completely blind, not able to sit up, crawl, or hit any of the typical milestones,” says Bernadette. Hospital stays became routine whenever Griffin fell ill.
Dr. Elizabeth Wright-Jin was one of the first neurologists Griffin’s family encountered. “She had the difficult task of telling us that our baby boy’s brain did not properly form in utero. She had to tell us that he would have epilepsy.” Her role in delivering the difficult news about Griffin’s brain complications and potential epilepsy was handled with patience, transparency, and empathy. “To get the news that you can’t fix your baby’s ailments, that his life would most likely be shorter than expected, and potentially really short? It’s impossible news to absorb. We were so grateful to her for her patience, directness, transparency, and attention to detail in all the discussions she had with us. I don’t know what we would have done without her in that first year as we navigated his devastating diagnosis of Lennox-Gastaut.” This set the tone for the family’s experience at Nemours, which was later followed by Dr. Lily Tran and her medical team at our hospital in Delaware.
“Dr. Lily Tran celebrates his growth and continues to keep his quality of life at the forefront of all of her decision-making. She helped us find the right medication and dosage, and she also introduced us to the Keto Diet. Since then, Griffin has been, for the most part, seizure-free.” In addition to the introduction of Dr. Tran as Griffin’s epilepsy specialist, along came nutritionist Robin and neurology nurse practitioner Jennifer: “They have been the dream team! They are fun to be around, knowledgeable, make coming to the hospital fun, and are always available. We feel that they really care about Griffin and our family, which has been incredible,” says Bernadette. With Dr. Tran and her team’s expertise, Griffin’s seizures were brought under control. This stability allowed Griffin’s personality o shine as he developed new skills, such as sitting up, scooting, and seeing short distances. The Nemours team celebrates every milestone, providing support and making hospital visits enjoyable.
Griffin’s progress has been a source of immense joy. “He can say ‘ball’ and ‘no’, and he is working on saying ‘hello’ and a few other words! He cannot walk—YET!—but he can sit up and has recently learned to scoot on his bum, so he can get around to the toys and books he wants to play with.” His infectious laughter and playful nature have brought happiness to his family. “Controlling his seizures has allowed us to interact with our baby, and his brothers now feel like they can connect with him and enjoy him. Most importantly, Griffin is happy. He is a sweet, snuggly, expressive, loving, goofy little boy, and we just couldn’t love him more.”
The family remains committed to supporting Griffin’s development and ensuring he receives the best possible care. “Our plan is to support and meet Griffin where he is at any given moment on any given day. Each day is different, and while we are haunted by the fact that we don’t know how long we will have our little guy, we are learning to grieve and feel immense joy at the same time. He is an absolute gift, and we will work tirelessly to find the best treatments and therapies to give him the most beautiful life.” Their journey is marked by relentless advocacy, continuous research, and a deep appreciation for the present.
To other families facing similar challenges, Griffin’s mom offers this advice: “It feels like it will never be okay at the beginning, right? The amount of grief is overwhelming. And you may never stop grieving the life you thought you would have, but you will find beauty, joy, and immense love. The best advice I ever received is to try to be present and take what your baby is giving you at the moment. Worrying about hiccups, illnesses, and even death down the road won’t prevent those things from happening, so if you are going to have to live through those, why live through it twice by worrying about it now? Easier said than done, of course, but the only journey that matters is the one you are on right now. Find the right team to support your child and you, and never stop advocating, researching, and asking questions. Most importantly, drop your expectations and meet your child where they are, don’t compare, celebrate all the wins no matter how small, and be lovingly present.”
