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Sturge-Weber Syndrome

Updated: Jul 30, 2019

Our son, Leo was born with a large bilateral port wine stain that covers the left side of his face. A port wine stain is a vascular birthmark that affects about 3 in every 1,000 babies.

As you can imagine, we were flooded with emotion. There was so much unknown. Shortly after Leo was born we found out that we needed to see a few specialists to make sure Leo did not have Sturge-Weber Syndrome; which is a rare disease that presents with a vascular birthmark (port wine stain), eye (glaucoma) and brain (seizures) involvement. This affects about every 1 in every 20-50,000 babies.

Unfortunately, we found out a few weeks later that Leo in fact does have Sturge-Weber Syndrome. He had an MRI at 6 weeks old and his scans came back abnormal. He also ended up having high eye pressure which lead to glaucoma surgery at the age of 3 months.

We had a lot of decisions we needed to make. It’s so hard to know what the best decision is when there isn’t a lot to compare to. It’s such a rare disease that it can be a lot of trial and error. Since Leo’s MRI scans showed some abnormalities we knew there was an extremely high chance he’d have seizures.

We decided to pray and ask God to really give us a peace about either putting Leo on preventatives or not. We are in contact with an amazing neurologist, Dr. Comi who has strongly advised us to put Leo on the preventatives. She has printed literature on her studies showing the benefits of getting patients immediately on preventatives once brain involvement shows up. We spoke with her a few times and felt God leading us towards the medication.

This will entail Leo being on baby aspirin and an anti-seizure medication (trileptal). It’ll be an extremely low dose that we’ll give him twice a day. There will be no need for a repeat MRI or EEG anytime soon. He will be on these meds for a few years and hopefully we can taper him off if he shows no signs of seizures. Our understanding is the brain does so much developing from the age 0-5 so you want to make sure the seizures are under control so the brain is not damaged.

This is a very intimate process with our son but sharing his journey has really allowed us to not only bring awareness to such a rare disease, but to bring hope to others! God truly is in control and I am witnessing His work in my son’s life.

Pictured here is Leo with Dr. Brandt from UC Davis Medical Center. Dr. Brandt is an infantile glaucoma surgeon, who has played a significant role in Leo's medical journey.

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