Yesterday was International Rare Disease Day. We joined the rare disease community in 2016 when Tessa was born, and it’s been quite the journey. Tessa was diagnosed with CLOVES Syndrome when she was 5 months old. Possibly the hardest part of living with a rare disease is the lack of information. Most often, I’m unable to simply google her symptoms (and yes, when she was really sick her doctors told me over and over to stay away from Dr. Google. I never listened) because her syndrome is very rare and complex. Tessa’s body is unable to properly absorb nutrients, but the team of doctors studying CLOVES syndrome do not yet have an answer for why this occurs. CLOVES is progressive, so her vascular malformations grow as she grows. Treating her malformations is a delicate line- do we try to stay ahead of the growth and do more procedures even though she is healthy and active? Or do we wait until a complication arises and then do the procedures? There’s not a one-size-fits-all approach to her condition and there are usually many different factors to consider. We talk with her multidisciplinary team in Mayo, we consider all the angles, and we spend a lot of time praying for wisdom.
Currently, Tessa is doing very well. The malformations in her groin are continuing to grow, however, and she does complain about belly pain. She is scheduled to have an MRI and ultrasound in April to see how everything looks and then her team will determine if any procedures are necessary. She has blood vessels on her port wine stain (called vascular blebs) that have started bleeding at random times, and she gets pretty scared when it happens. But we’re learning the best way to handle it, and as usual, she learns right along with us and takes it in stride.
Living with a rare disease is challenging, but we are so thankful for her team of doctors, for the CLOVES Syndrome Community organization, and most importantly for the many people praying for her and the heavenly Father who created her. 💚
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Love the photo you take with her! Amazing how far she has come. Thankful for a God who knows all about it and that you call on him for wisdom.