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Maia’s Story (RA, JIA, EDS, AMPS, Lupus, Fibromyalgia, Gastroparesis)

maias-story-ra,lupus,fibromaylgia,etcMaia’s Journey – Updated December 2020

Maia was an IVF baby, and I was pregnant with twins and lost one at 11 weeks and five days. Maia was perfect, but I was so sick through my whole pregnancy that she came into this world 9 weeks early. HOWEVER, she was healthy, or so we thought.

Around the age of two, Maia was sick every month with strep throat, ear infections, throat infections, etc. She had three sets of tubes put in her ears and had surgery to remove her adenoids, sinus window surgery, and a cilia biopsy to rule out any infectious disease. She remained sick every month and was on more antibiotics in three years than most adults are in their entire lifespan. Strangely enough, when Maia was five years old, she stopped getting sick. We were told that her immune system was completely compromised, but Maia felt great, and we went on with life as normal until November, 2012.

Maia had just turned 11, and she started to complain about ankle and foot pain. My first thought was to go to an orthopedic doctor. We went to the orthopedic doctor, and he said, “don’t worry, we see this all of the time”. He said she had Severs disease, which is related to growing pains. The orthopedic doctor decided to cast her foot and ankle for 8 weeks, but her pain increased. So, they re-casted her for 4 more weeks, and then put her in a boot for 8 weeks, and she still got WORSE! After 18 weeks, the orthopedic doctor said he knew this was not an orthopedic issue and said that Maia should see a rheumatologist. We found a rheumatologist and on April 15, 2013, we received her official diagnosis which was ‘only’ ankylosing spondylitis (AS).

Maia’s journey down this long crazy road with AS was just beginning. She was with this rheumatologist for about a year, when he finally said that he had hit a brick wall. Maia’s pain levels were 7-10 every day. He said there was nothing he could do, but maybe treat her for fibromyalgia. That’s when I knew he really couldn’t help her anymore. Maia starting having flare ups, and she was falling and tripping on everything, couldn’t focus and had to stop ALL extra-curricular activities. She was in so much pain that going to school was becoming a challenge, and she was missing more and more days because she couldn’t function. Her grades were suffering, she couldn’t do things with her friends, and if she did, she needed a couple of days after to recover.

Maia was the epitome of a fun, always busy, and a very talkative happy child. Her passions included competitive cheerleading from the age of 5, softball, and spending summers at gymnastic camps trying to get even better for the next cheer season. Maia had to stop all activities and had begun to lead a very isolated life. So, needless to say, she became withdrawn, sad, lonely, and very clingy to my husband and me.

I posted my frustration on Facebook one day. It was the first time I had shared publicly that there was anything wrong with our daughter. Someone on Facebook directed us to Cincinnati Children’s Medical Center Hospital. We lived in Florida at that time, and  I emailed the doctor requesting an appointment. I attached every medical record, MRI, and x-rays of Maia’s from the age of two. I finished the email and held my breath. Five days later, Dr. Daniel Lovell wrote me back and said, “I will take her case. I have read through all her medical reports, and she needs to come to Cincinnati immediately.”

On December 8, 2013, we left Florida and traveled to Cincinnati. Dr. Lovell and his team were gifts sent from heaven!! They did everything. They scheduled every test, MRI, etc. The team spent over four hours with us alone figuring out how we would work the next three days. I was amazed and hopeful, but also scared. They came back and formally diagnosed Maia with a host of illnesses. Little did we know it was just the beginning of her diagnoses…
 Juvenile Idiopathic Arthritis( JIA)
 Ankylosing Spondylitis (AS)
 Hyper-mobility syndrome – Ehlers Danlos Syndrome (EDS)
 Synovitis
 Enthesis Related Arthritis (ERA)
 Rheumatoid Arthritis (RA)
 Auto Immune Deficiency

They set her up for surgery the next day to inject her SI joints and ankles. The surgery took two hours. When Maia woke up, she was in pain. She said it was a different pain. Maia recovered from surgery and it was snowing outside. This was the first time that Maia had ever seen snow. We were shocked, but she laid down on the ground to make a snow angel and was so happy to be able to do that and then we headed back home. Maia was scheduled to go back to Cincinnati every six months to meet with her team of doctors and have additional surgeries. The plan was set. We had new doctors in a new city and were extremely excited.

On December 11, 2013 (1 day after we left Cincinnati), she had her FIRST pain-free day in over a year. It was so amazing. However, the joy didn’t last long. Just two weeks after we returned home to Florida, Maia had a horrible flare up and couldn’t walk. It was an entire week of non-stop pain. We had just left our new team of doctors, but they were so far away. Maia was crying in pain, and no one in the area could help. They started her on heavy doses of prednisone (steroid), and we had no choice but to care for her on our own and we watched her fight like a girl every day.

THE NEXT STEP CAME SOONER THAN WE THOUGHT…

One of the biggest misconceptions of Maia’s diseases is that she looks perfectly normal. There is a very popular response of, “but you don’t look sick.” If you are interested, look up the Spoon Theory, it helps explain what happens when someone has invisible illnesses. She is sick, but she doesn’t look sick.

Unfortunately, Maia IS sick, she will never get better and she will progressively get worse. She won’t lose the hair on her head, but she will become disfigured. She is able to walk now, but eventually, there will be a day where she will be dependent on some type of assistance to get around. She is able to go to school and we started her on a 504 plan for her medical needs at school; but as she got older, we all worried if she would be able to handle going from class to class all day long in middle school, high school and even college.
We thought that we would not have to go back to Cincinnati for six months, however, Maia’s body had other plans. Her pain level was hovering from a 7 to 10 daily.

In March of 2014, we flew back to Cincinnati. The doctor explained that Maia also had a ‘slippage’ in her L5 vertebrae on her spine. The x-ray showed the gap that they refer to as a slippage. Maia had surgery again on her SI joints, ankles and received injections into the L5 area, which is the middle part of her spine where the bones are not aligned correctly. Doctors informed us that her Spondylolysis was now a grade 2 and there were only 3 grades before she would need to have back surgery. She has scoliosis and she was curved 18 degrees, not too bad for the moment. Her diseases were progressing quickly. They also said that she wasn’t responding as well as they’d hoped to the medications and injectables. Maia had to start IV infusions of a new medication every 28 days, four hours at a time. Our lives drastically changed and nothing will ever be as it once was.

In April of the same year, Maia received a call from the Make-a-Wish Foundation. It scared her more than you can imagine, she worried that if she was to have a wish that it also meant she was dying. It took her over six months to even speak to the wish granter. They offered her trips, Disney World, anything she wanted. She was overwhelmed to begin with, that this was not something she wanted to accept. However, in November 2014, Maia’s wish was granted and we (Maia, her brother, Brett, her parents and her grandparents) got on a plane and headed to LAX. Sounds like a good time right? Well, Maia had other things in mind about what she wanted to do in California. Maia chose to meet her cousins, aunts, uncles and family that she thought she would never have the opportunity to meet because she was so sick. She wanted to have Thanksgiving Dinner with every family member possible. It was the most meaningful week that we ever had. Maia’s wish was NOT to go on a cruise or to meet a star, she just wanted to bring her family together, just in case. To this day, we are blown away with how loving and kind Maia really is. She has paid it forward in many ways and each year we donate to Make-a-Wish and one day, Maia will be a wish granter.

In February 2015, (Maia was 13) we moved from Florida to Lower Merion, PA. The doctors in Cincinnati had been very open and honest and said that they had hit that proverbial ‘brick wall’. Needless to say, we were scared. We started with the new rheumatologist in PA immediately. We also saw a connective tissue doctor in November of 2015. She confirmed Maia’s diagnosis of Ehlers Danlos Syndrome (EDS). I was not surprised. We knew she had it, but the formal diagnosis made it very real. There is no cure for EDS. Maia had been in her new middle school, trying to make new friends and keep her grades up because she missed so many days. All of these things and more caused stress. Whether it is healthy stress or unhealthy stress, it changed Maia in ways that we had never imagined. Maia had not woken up without pain in so long that we all became numb.

ONCE AGAIN LIFE CHANGES…

Maia was getting older and really knew her body and decided to take complete charge of it. She told her doctor that he is not doing anything to help her, she can’t live like this anymore, she hates her life, and she needs relief. Her doctor knew that in her medical and emotionally fragile state, everything was a risk. She had finished 7th grade and was worse than she had ever been. She couldn’t get out of bed for days at a time. On Tuesday, July 5, 2016, she was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS).

Really? Another diagnosis? That was it. The doctor said it is real pain, not in her head, he sees the pain she has when he examined her. This led to Maia needing to enter an inpatient program for 30 days. All I could think of was, wait, what?? My daughter was being sent to an in-patient program for 30 full days with no time out of the hospital? On July 19, 2016, Maia became in-patient in the AMPS Program at Children’s Specialized Hospital in New Brunswick, NJ, 2 hours from home.

Maia needed relief and this inpatient program was going to teach her how to live every day with her illnesses. She spent eight hours a day / six days a week doing physical therapy, occupational therapy, psychological therapy, music therapy, art therapy, swimming and more. We were only allowed to visit at night and on Sundays. We could sleep there if we wanted to, but we were not allowed on her floor during the day. This was one of the hardest things that we had to go through, but I knew it was the best thing for my daughter’s future. My husband, son and I, all took turns travelling every day back and forth to the hospital.

They had warned us that the in-patient program would be intense, but Maia did it! It was hard, she pushed herself every day, she fought for her health and she WON!! On August 22, 2016, Maia came home! She knew she would have to start 8th grade late, but she felt like she trained for the Olympics and was up for the challenge. She started 8th grade, late and she was healthier than she had been in five years. She continued to do all of the outpatient exercises and made it through middle school. Her dream was to still be able to cheer once she got to high school. Maia had some flare ups and injuries, but for some reason, we were able to handle everything that came our way. We were all living our lives again.

Maia wrote the following when she came out of the hospital. “As I get ready to start my first day of school, I want to share that I have just spent a month in the hospital. I’ve been diagnosed with JIA, EDS, AS, AMPS, RA. Over the past several years, I have been dealing with countless doctors, medications, surgeries, shots and treatments. Although I look ‘normal’, I am not. I don’t want people to pity me because I can’t change what happened. Sorry is just a word, I don’t want to hear sorry. Instead, what I am hoping for is that people see me for me and only me.”
Maia also posted with this the quote, “I survived because the fire inside me burned brighter than the fire around me.”
#FIGHTLIKEAGIRL

A NEW CHAPTER BEGINS… OR DOES IT?

Maia had worked so hard and had one goal that she was fiercely focused on. In May 2016, Maia tried out for her high school’s varsity cheerleading team and made the team. With the doctor’s approval, Maia started high school in September 2016 with the realization of her dream to cheer again right in front of her. WOW! Yes, she’s had several injuries, broke a finger, tore her ACL, sprained her wrist and had several flare ups, but she NEVER wavered. She kept pushing through. I am beyond proud that Maia made the varsity cheerleading team again for her sophomore year and was named a captain. She had a few injuries over the year, but she powered through the best that she could and worked hard on and off the field.

In 2018, Maia was diagnosed with Lupus. I really thought that it was a bad dream that we were in and how could this be another diagnosis? She tested positive on the ANA test for lupus and is now on another medication to help her with her daily struggles. She made it through the school year with a ton of absences. We met with her team of teachers to explain what Maia has and explained that even though she looks normal, she is anything but normal. It took a ton of work and perseverance to finish her school year, but she did it.

Maia started her junior year of high school in September 2019. She made the varsity cheer team again and she was named a captain, for the second year in a row. As soon as the season started, Maia had a very bad hip dislocation injury. She had to sit out for a couple of weeks, but she was determined to continue to cheer and go to school. Maia also went on a trip to Israel over winter break with her confirmation class and clergy. She had to work very hard with her team of doctors, the doctors in Israel and with our clergy. She was determined to go and she did. We prayed she could handle it. She did! There were a few bumps along the way over the 14 days she was in Israel. She couldn’t climb the mountains like everyone else, but our clergy were so amazing with her, no one really noticed what she couldn’t do.

One thing that I wished for was that we were done with the diagnosis nightmare, however, it was anything but. Over the summer 0f 2019, Maia had been sick in her stomach several times a week. I listened to her, but I wanted to see what would come of it. After about a month, Maia started to throw up almost everything she ate (undigested) and even anything she drank. We started to chart each day to see what happened. We went back to her Rheumatologist and they sent her to a GI specialist. Maia lost weight (which any teenage girl would want right?) NO… not like this. Maia went through a series of tests and was diagnosed with Gastroparesis. She has bad mornings, afternoons and evenings because we never knew when she would be sick. There were many days that I dropped her off at school and within 10 minutes the nurse would call to tell me Maia was in the clinic throwing up. This was another new normal to live with and we took it day by day.

In March 2020, when COVID-19 started, it changed everyone’s life. Maia’s life was changed as well. Many times when someone has auto immune diseases, stress plays a huge roll in how they feel every day. The stress of Maia having to start school online at home was overwhelming and very depressing for her. She hated every minute of it. Once again, Maia became withdrawn and her pain flare-ups were happening more often than they were over the last 2-3 years. She couldn’t cheer, she went back to physical therapy and tried to keep her body healthy and it was really hard, but she managed each day to keep going.

The excitement of Maia becoming a senior in high school was also squashed by COVID-19. Maia wanted to find something positive to focus on. She was named a captain again for her cheer team, third year in a row. She desperately wanted to have a fall football season because she knew it was her last. Maia was told over the summer that she would not be able to do very much as a cheerleader due to her pain and worsening health, but again, she pushed through and made it through football season. Maia absolutely hates online learning and is struggling to keep her grades up.

In June, 2020, her grandmother passed away after fighting lung cancer for six months. In the middle of COVID-19, we went to Florida to be with my mom. (Maia’s ‘Nanu’) My mom went into hospice care on June 19, 2020 and six days later on June 25, 2020, she passed away. The profound loss of my mom, Maia’s Nanu, has devastated all of us and we are still processing how to live without her. This only furthered Maia’s stress and when we returned home after the funeral, Maia was in bed for almost a week. Maia had gotten her driver’s license the day before PA shut down due to COVID-19. We were so proud of all that she had accomplished over the years and this was a big one. She is a great driver and had tons of practice.

Could it be that easy? No… on October 26, 2020, Maia was in a car accident. Thank goodness she was okay, but it was so traumatic that she was in the hospital with a dislocated shoulder and seat belt bruises. She was fragile once again, but at the end of the day, she really was okay and this too would pass. In November 2020, Maia saw her rheumatologist and was told that her slippage was really bad and she is facing back surgery as I write this.
We live in a constant state of being worried all of the time. We worry about her just getting through a school day, even at home. We worry when her pain level is an 8 or 9, but she does her best to power through. We worry that all of these medications and injections will hurt her body more than it already does and we worry about the brain fog and side effects of all of the medication. We worry that she won’t do well in school, which snowballs into the worry about her not getting into college. We worry about where she will go to college and how close she needs to stay so that we can get to her in the case of an emergency or if she is has a flare up. The worry just never ends, but we also have to let her be 18 years old and have faith that she is listening to her body and self-limiting to make it each day.
 Will Maia ever get better? NO
 Does Maia want pity or for anyone to feel sorry for her? NO
 Will Maia have more medical issues and needs? YES
 Will Maia have more injuries? YES
 Will Maia need a day or two or more to recover from cheering or going out with a friend? YES
 Is Maia “faking” it? NO
 Does Maia want to be treated normal? YES
 Will Maia be fine one day and sick the next day without warning? YES
 Does Maia want to succeed in school and college and one day become a child advocacy attorney? YES, IN EVERY WAY POSSIBLE

The reality of all of this is that she is fighting like a girl every day. We know this is not the end of Maia’s medical journey, this is a forever journey. What we can do and will continue to do is support her, treat her with kindness and care, and remember that just because someone doesn’t look sick, doesn’t mean they aren’t sick. Maia is living proof of that and as her parents, we cannot wait to see what the future holds for her because she is our WARRIOR.

Lauren & Marcos, parents of a Fight Like a Girl Warrior, Maia!

PA
Submitted 12/04/2020

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. Hi Lauren and Marcos. After reading what you and your sweet daughter have been through, my heart aches for you all. Although I’ve not met Maia, it’s clear she’s one tough cookie…just like her parents and grandmother. I bet you are both bursting with pride. She’s truly an amazing young woman. I’ll keep you all in my prayers.

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