Ea Solstad

KK Name: Ea Solstad
Age: 6
Cognitive Age: 6
Therapies: Fysio therapy, therapeutic swimming, graduated from speech therapy
Schooling: Mainstream with an aide, standard cirriculum with adjustments for vision/hearing impairments
Siblings: Gjendine (9)
Parents: Karethe and Oeyvin Solstad

Kabuki Symtpoms: Hearing loss, short stature, ventricle septal defect (VSD), kidney problems (cysts) and poor vision with a lack of depth perception

Ea's Story: Karethe and Oeyvin enjoyed the birth of their first daughter nine years ago, and she was the image of perfection. Typical in every way, she walked at 9 months and was skiing by 11 months. As she grew, they knew she needed a sibling and decided to have another baby. Before Ea was born, the Solstad's knew that this child would be different. Karethe was far more fatigued than with her first pregnancy, she had excessive amounts of amniotic fluid, and ended up with gestational diabetes that went undiagnosed and was therefore not treated. On top of that, they knew that Ea was likely to have issues after birth, but elected not to do further diagnostic testing. To them, it didn't matter, they would love their baby and do everything in their power to make sure she had a shot at life. They were told the worst case scenario was that Ea would not make it, and the best case was harmless kidney failure. What they ended up with was something in the middle.

As with many Kabuki kids, Ea showed her parents early on that she was going to be in control. She showed up four weeks premature, blue in color, and was whisked away to the NICU immediately. The Solstad's barely knew that she was a girl, and had no idea what was in store for their baby. Oeyvin raced to the NICU, where he was met with dozens of questions about Karethe's pregnancy, but received no real answers as to what was wrong with their baby. He only knew that things were not as they should be.

The next day, they talked with a pediatrician who was worried. The doctor was waiting on a geneticist to review Ea's chart because there was so much wrong. Her heart had a hole, she couldn't breathe without help, she had seizures and her blood sugar was practically non-existent. Her kidneys had some problems, which they expected, but now they saw something concerning with her eyes as well. The Solstad's listened closely, took note of what the doctor was telling them, and when given the opportunity to ask questions, they did. Of course, they had a million questions at the time, but they decided to ask just two: Does she see or is she expected to be blind, and will she survive for them to take her home? The answers were positive. Yes, they thought she had some vision, and yes, they were pretty sure she would live. That was all they needed to hear, deciding then that they would deal with the rest as it came up.

Their lives changed that day, but a new life began. Karethe spent her days in the NICU with Ea watching her every move, studying her face, her fingers, everything. Ea had dysmorphic features, she didn't make eye contact and did not make typical baby sounds. Karethe wondered if Ea was present, if she would ever communicate, if her brain was affected. She didn't have those answers, but she did know one thing, "She gets to be loved, that's what matters."

As the days continued in the NICU, Karethe began to have thoughts of Ea potentially changing their lives, the things they enjoyed doing. The Solstad's love to be outdoors. They hike, they ski, they spend their summers in their cabin in the mountains, drinking water straight from the stream and enjoying outdoor adventures. Would Ea be able to join them, or would she change everything? Big sister, Gjendine, had already spent several summers in the mountains with them, hiking to the summit of the peak they can see from their cabin. She was already a great skiier, too. Would Ea ever get to do these things? They consider their way of life part of their identity, and the thought of having to change that was overwhelming to say the least. But Karethe couldn't let those thoughts take over, "The thought of having to give it all up got to live a few minutes before I chased it away once and for all. Little sister HAS to be part of our life as we know it. She will be a full member of our family and we will never stop doing what we love. It just has to work…"

From that day forward, everything moved in a positive direction. Karethe isn't sure if that's because things really were positive, or if it's because they chose to look at everything from the positive side, but either way doesn't really matter. What matters is that they chose NOT to change their way of life, that Ea would be a full member of their family, that she would partake in their adventures, no matter what it looked like. Their family motto became, "No limitations, just opportunities."

Ea did not go to the cabin her first summer, but has gone every year since then. She traveled out of the country for the first time at 5 months of age, with the Solstad's toting 22 kilos of her specialized formula and an additional 10 kilos of medical equipment with them. They went to visit Ea's grandparents in Greece on that first trip, and Ea handled it in stride. The Solstad's continue to travel with both girls, though it's a little bit easier now since Ea stopped using her G-tube at age 3. They have never once put a limitation on Ea, and she shows them every day just how much she is capable of doing!

 

When she was 1.5 years old, they got her a sit-ski. At age 3, she began to ski on her own with a harness. By age 6, she was telling Oeyvin that she could do it by herself, and she did. Ea enjoys going to the cabin in the mountains, and her goal is to climb to the summit of the mountain they see from the front door of their cabin. It's a 7km hike with an elevation of 1100 meters. It may not be this year, or the next one, but Ea hikes a little farther each year, and it's clear that one day she will reach her goal. And her family will be right by her side when she does it, cheering her on as loudly as they can. Because that's what they do. They don't tell her she can't do anything, they tell her she can do anything and they are her biggest cheerleaders!

Ea’s Favorites: "Ea loves being outdoors, hiking, climbing, skiing and biking. She loves helping dad with projects on the farm, and is the most enthusiastic child we know. Ea’s most common phrase is “I’m In!”. She lives in the moment, dreams about new trips, but mostly concentrates on the present and lives life to the fullest. Life truly is a festival for Ea!"

 

Ea’s Relationship With Her Siblings: "Ea and Gjendine are typical sisters: best friends one moment, and bitter enemies the next. They love each other, care for each other, and play well together. They have some mutual friends, and in general, all Gjendines friends love hanging out with Ea too."

 

Advice for Kabuki families: "Hang in there, this too shall pass. Your baby will get there, be patient, it will happen. Do not always follow the advise saying “make sure you get some sleep while baby sleeps”. Believe me, those 20 minutes you may be so lucky to get will just act as a big tease. Sometimes just pour yourself a glass of wine instead. And pretend there is no vomit on your shirt. That helps too :)"

Advice for parents of “typical” children: "No, she is not sick. She has a syndrome, but apart from that she is healthy. Having a child with a diagnosis/syndrome/special needs does not always mean the parents have been through a process of grief. Many people talk to us about the grief of having a non-typical child. And I am sure many parents experience this. But we never did that. Nothing about Ea is worth grieving, we never say, “what if,” or think about how life would have been had she not had Kabuki syndrome. Because then she would not have been Ea. Our crazy, bubbly, way-too-much-energy-in-the-morning Ea. There are so many people we never would have met without Kabuki. We would not trade it for anything."

 

How Ea has impacted the family: "We are truly thankful for getting to know a unique child like Ea. To follow her development and see her reach her milestones (which she works so hard to reach) is amazing. Seeing how our community welcomes her, and how they too appreciate her uniqueness is a gift. Sure, those first two years with literally no sleep, failure to thrive, g-tube feeding and constantly cleaning vomit from walls and ceiling was torture, I would never wish that on anyone! But the joy Ea brings, her positiveness and her enthusiasm, is worth it all. Those little baby steps overshadowed the no sleep, constant vomiting days. Being Ea’s mom is wonderful, she brought a new dimension to our lives, a new way to see things and a bigger appreciation for the small things. And she opened up this amazing world of fellow Kabuki parents, a world of warriors, who we admire greatly."

The Solstad's have such a positive outlook on life, and have such an amazing support system of friends and family who make sure that Ea is not only included, but treated the same as other kids. They have surrounded themselves with people just like them, who are positive in their outlook on life and refuse to put limitations on their daughter. Their outlook on life with Ea is one that suits their lifestyle, "Life with Kabuki kid Ea is truly a festival, we are grateful she got to be ours."

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome. 

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