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Born with Sturge-Weber Syndrome and Thriving

By: Julia Terrell, Community Relations Director for The Sturge-Weber Foundation

It was the start of our 10th year of marriage and my husband and I were going to be a family of three! We were enjoying every moment of our perfect pregnancy and preparing for our first baby to arrive. I had just turned 37 and I remember the doctor asking me about testing. My response was, “No worries! If we find that our baby girl needs treatment, we will do our homework, get the right specialists and it will be okay.”

On March 23rd, 2009, I got up, got dressed and went to work. I was sitting at my desk when my water broke. Then, 20 hours of labor and a c-section later, Marissa arrived! The first thing I remember was everyone’s facial expressions while I waited on the other side of the curtain to see my daughter. In a conversation with my mother and husband, the doctor said, “No, the redness won’t go away. We will talk more tomorrow.”

What did that mean? I wanted to see Marissa even more to figure out what they meant. When I looked at her and saw the port wine birthmark and her swollen eye I thought, “She can’t go to school like this. We are going to need help.” I knew our world was going to be different than other new parents, I just didn’t know yet how different.

The next morning at the crack of dawn, our hospital room became a revolving door. Doctor after doctor arrived. Every doctor that came by left me with the feeling that more was coming, and I needed to prepare. When a dermatologist arrived, I thought, “Wow! They’re taking Marissa’s ‘birthmark’ pretty seriously to send a specialist so soon!” Finally, the pediatrician explained what could, should, or might happen with Marissa… starting with a CAT scan. I was screaming on the inside. “What does all this mean? Yesterday, they said it was just a birthmark and bruising, now my day-old baby needs a CAT scan!”

The results came back. They had been looking for calcifications (whatever that meant!) and luckily didn’t find any. The neurologist explained that she may have Sturge Weber Syndrome.   My head was spinning. I had no idea what that was, but we focused on the good news and started to relax and get ready to take Marissa home.

As the weeks turned into months, Marissa had check-up after check-up. I started to learn all I could about Sturge Weber Syndrome. I wanted to understand her port wine birthmark and the treatments for it, and to learn more about what I needed to look for in the future, like glaucoma and seizures.

I came across The Sturge Weber Foundation and we decided to attend a conference as a family. When we arrived, a larger-than-life lady came out of nowhere, scooped up my baby girl and loved her so tight. My shock turned to joy as she was the first person that didn’t look at Marissa with any judgment. I never felt so comfortable or free to talk about the syndrome Marissa might have and what we were going through as a family. We’d found a new home.

Thank goodness we had them because when Marissa reached 10-months our world turned upside down. Marissa cried and moaned all morning, then out of nowhere she vomited, and back-to-back seizures began. It took nearly five days to control the seizures. It was official. We had a Sturge Weber Syndrome diagnosis and we were sent home with medication.

It happened again when she was two and a half years old. These seizures were even harder to control. We were sent home again after five days with even more medications. She also developed glaucoma around this time. Everything they said could happen with Sturge-Weber was happening. Luckily, we weren’t alone.

Today, Marissa is 10 years old and is holding steady. She may have more doctors than the average 10-year-old and has a harder time doing the things her friends can do, but her life doesn’t stop every time she gets sick. She’s a champion for positivity and hope and she teaches me something new every day.

We always try to keep Marissa protected. We slow down when she’s sick to reduce the risk of seizures. We also protect Marissa’s skin, especially her birthmark from sunburn as it can burn easier, with clothes and hats from Coolibar. She needs protection all the time, so helping her develop a habit of covering up has been easier than constantly applying sunscreen. With Sturge-Weber Syndrome Marissa has still accomplished so much in her 10 years. She’s gone on vacations, advocated on the hill, participated in dance, sports and music, and she swims every week with her Special Olympics coach. Yes, she will struggle physically because of her syndrome, but she’s not afraid to tell her story and she believes in herself!

Every day, I am so proud of her.   We don’t know what tomorrow will bring for Marissa, but we’re so grateful that we have the blessing of watching the rest of her story unfold.

To learn more about Sturge-Weber Syndrome and hear more stories about wonderful people like Marissa, please visit sturge-weber.org.

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Together We Will… Help All Children with Sun Sensitivities!

By: Karene Boos, founder ZeruZeru Simama Sasa!

ZeruZeru Simama Sasa! has two meanings. Literally, it means “People with Albinism Stand Up Now,” (encouraging them not to be afraid); secondarily, it can also mean “Stop Prejudice Against People with Albinism Now!” 

ZeruZeru, Inc. is a non-profit 501c3 organization incorporated in the United States. ZeruZeru was started by attorneys Eric and Karene Boos in 2013 for the purpose of securing human rights of the poor and vulnerable in Tanzania–especially persons with albinism.

Albinism is a genetic condition that results in a lack of the production of the pigment melanin. This means that people with albinism are very sensitive to light and sun exposure. They are at risk for severe sunburns leading to skin cancers, other skin disorders and sun-damage thickening of the skin. People with albinism also have vision impairments related to the lack of melanin.

Beside the increased skin cancer risk, people living with albinism in Tanzania are living in fear for their lives. In Tanzania, those with albinism are at risk to be hunted, abducted and mutilated for their body parts for use in traditional medicine and mystical belief practices. A complete set of body parts from a person with albinism can bring in up to $75,000 on the black market, according to a 2009 report by the International Federation of Red Cross and Red Crescent Societies. The Government of Tanzania has taken important steps to tackle the problem of ritualistic violence against people living with albinism, but extra protection is still needed.

Often the families of children with albinism cannot provide security for their children in rural areas. The primary goal of ZeruZeru is to establish a sustainable, self-sufficient, safe-haven campus for children with albinism and some children with physical impairments. With the help of Helena Ntambulwa at Mary Mother of God Perpetual Help Center in Tanzania and her staff, ZeruZeru is currently caring for nearly 70 children.

The Center provides a safe environment for the children to learn, grow, play and be integrated into local life. The children are provided with access to education, general health care and daily preventive skin care. The Center also educates the families and friends of these children about the health risks associated with their lack of pigment and the importance of proper sun protection. Children often arrive at the Center with severe burns on their skin. Because of the lack of melanin, it is vital to their health that they wear UPF 50+ clothing that blocks 98% of all UV rays.

UVA rays, which penetrate the skin more deeply than UVB rays, contribute to and may even initiate the development of skin cancers. As opposed to UVB rays, UVA rays can also penetrate most fabrics.

Skin Cancer Foundation

We’re grateful to Coolibar for its commitment to helping protect our children by donating hats, gloves, long sleeve shirts and beautiful dresses and tunics. Beyond keeping them safe, it’s our job to help these children thrive. With UPF 50+ clothing, they can get out and play, learn and explore!

Please visit our website at www.savethealbinochildren.org or contact us at info@savethealbinochildren.org for more information.

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