Madison’s story: Battling a vascular malformation

September 19, 2016


When my husband and I went in for my 15 week checkup, we thought things were going to go smoothly and that this would be like any normal appointment. We went in excited to find out the gender, but left with life changing information.

That day, Madison was diagnosed with a vascular malformation. When we first learned about Madison’s diagnosis, we were devastated.  We stayed calm, but we were both equally upset and heartbroken at the diagnosis.

Madison was born April 13, 2015 at a hospital in Florida. The doctor took one look at our little one and told us he didn’t know what he could do for her, so we decided to go back to our original plan to go to Texas Children’s. Two days after her birth, the Kangaroo Crew showed up at the hospital to pick us up. Thankfully, when Madison arrived at Texas Children's Hospital, she was correctly diagnosed with CLOVES syndrome.

The team at Texas Children’s have been incredibly helpful to her well-being and treatment. Currently, she has undergone one treatment of sclarotheropy, some topical and oral management including a compression garment, as well as lymphatic massages. We are currently awaiting her next sclarotheropy treatment, which are typically about six weeks apart.

Madison sees so many doctors it’s hard to count. This includes hematologists, infectious specialists, plastic surgeons, general surgeons, radiologists, pediatric doctors, developmental specialists, etc. She doesn't just see the doctors that are treating her, but doctors who are also interested in learning more about her condition. I think by getting her story out there, it spreads awareness and comforts other patients with the same condition by letting them know they’re not alone. It doesn't even have to be this specific syndrome, but it may help people who may have other rare conditions as well. It’s difficult to have a child with a rare condition, so I hope by sharing Madison’s story it helps patients and parents alike.

Currently, Madison is doing very well considering that she takes an immune suppressant. We have good days and bad days, but she is happy and that is all we ask as parents. She’s a little fighter and survivor. We love our little hulk!

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