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When I Watched My Daughter Perform in 'The Lion King' After Receiving a Rare Diagnosis

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Every mom is proud of her child when he or she is part of a school performance, whether it is a music or dance show, or school play. Along the years, I’ve seen my daughter Lynn perform on stage during many occasions. It all started with her first nursery graduation, then it moved on to her kindergarten graduation, the end of year school play, several ballet shows and music shows. I’ve always been that proud mom crying tears of joy behind the camera. I loved seeing her talents blossom year after year. She never had problems performing in front of a small or a big crowd; in fact she was a natural and owned the stage every single time.

Youmna's daughter and her hands, red from EM.

Youmna’s daughter and her hands during an EM flare.

This year was a bit different. Towards the end of the first school term, Lynn started having her erythromelalgia (EM) symptoms. Not a single doctor in Dubai was able to diagnose her, with EM being the rare condition it is. So we set on our journey to Canada and the U.S. to find a doctor familiar with EM. Flying from Dubai to Canada on a non-stop flight would take 14 hours. However, with the swelling in Lynn’s feet and the continuous flaring, I doubted she would be able to handle such a long trip. So our flight to Canada took 24 hours and a half, in total with the layover time. It was rather a very wearisome trip. We arrived to Canada, just before Christmas, and we stayed with my parents in Toronto. I was hoping that being with family would help distract Lynn from her pain. For weeks, we waited for replies for referrals to see any pediatric neurologists familiar with EM. I had no idea that being on the waiting list would mean Christmas and New Year would pass with no replies. The cold weather in Toronto has suited Lynn, and her flares were less severe than before. The second school term was about to begin, and I wasn’t going to return to Dubai without a diagnosis or a treatment plan. International patients often have to wait long to get a referral. I wasn’t ready to let EM win yet, so a decision was made: Lynn would continue her school year in Canada while waiting for a referral.

Lynn joined a private Montessori school, and the administration and staff were informed of her health condition. The school campus was small compared to her school in Dubai; there were no stairs or long hallways, which made it easier for her to move around without the need of a wheelchair. The school made it easy for her to call me during the day whenever she flared, and she was allowed to rest outside the class and be exempt from doing gym. The daily struggle was evident and she missed many days of school and worked from home.

March break was one week around the corner and we still hadn’t heard from any hospital. Lynn had passed the second term with remarkably high grades despite her struggle, but she was getting physically weaker by the day. I prayed hard, I prayed bitterly, I prayed heart brokenly, I prayed while pleading and begging. My prayers were answered on March 21, after five months of waiting. Mass General Hospital in Boston replied and Lynn got an appointment with a pediatric neurologist familiar with EM. We flew from Toronto to Boston, and Lynn’s EM was confirmed. The doctor explained all there is to explain about EM and made sure we understood there was no cure for this rare condition. Treatment would be by trial and error and entails many side effects. Lynn understood it all too well for her age. Her hopes of any cure were crushed, but her determination to be back to school grew stronger. She wanted to face and fight EM her way, among  her new friends and new teachers. She wanted to hold on to being a normal kid for as long as she could.

We decided Lynn should finish her third grade in Toronto. It hadn’t become any easier after the diagnosis, and Lynn’s determination was tested daily. Her activity level had gone down to zero. Her diet was so limited and her sleep was constantly interrupted. However, she’s the warrior princess who decided to fight EM by auditioning for the end of year school play. She was excited, yet skeptical. I encouraged her to audition because I believed it would do her well psychologically.

Imagine my surprise when one day she returned from school to inform me that she nailed the lead role in “The Lion King!”

She never told me she auditioned for the lead role. Apparently, she auditioned for more than one role, because she felt the experience of it would be fun in itself. She got the role of Simba, and was ecstatic with joy.

The weeks passed by and the warmer weather and the pressure of the rehearsals were taking their toll on Lynn. Her flares were recurrent and daily. Even during flares, she rehearsed her lines in bed. She memorized her part and those of her friends’ all so quickly. Four days before the play, she had a very bad flare that affected her throat and she lost her voice. I did all that I could to keep her spirit high, but her anxiety level was higher. Thankfully, her voice recovered in time for the play.

Last night was the big night. Both the kids and teachers were anxious. The teachers worked so hard and wanted their students to show their best performance to their parents. Some kids were anxious about forgetting their lines, others were worried their voices were not loud enough. Lynn was worried because of her flares.

Youmna's daughter's performance in The Lion King.

Youmna’s daughter’s performance in The Lion King.

I was allowed to stay during the final rehearsal because Lynn was flaring badly all day long; her hands were burning and the same applied to her feet and ears. Lynn held on to ice packs to cool her hands, and I helped raise her feet high off the ground, in between acts. She was in pain, but she sucked it up and went on stage. I held the camera and recorded the whole play. I fought many tears during the play — tears of joy, pride and pain. The audience awed and applauded Lynn several times. I kept a big smile for my daughter to see, while tears of joy ran down my cheeks. I was so proud to see her perform so sincerely, and to hear strangers comment on her natural talent, but I was also aching for her pain. Only my eyes noticed how she held her hands in pain during some singing scenes, and how she jumped off her feet behind the curtains because the pain was unbearable. She also came off stage during the intermission to take her remedy so she could finish the play. She didn’t forget a single word, and she hid her pain so well that her performance was truly impeccable.

Once again another show performance, and I’m a proud mama as always, only this time for different reasons. I’m proud my daughter is such a strong fighter. I’m proud she let her determination beat her pain. I’m proud she pushed beyond her limits and excelled. I’m proud that my warrior princess was Simba of “The Lion King.”

Follow this journey on The Fire Fighter Mom 

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 27, 2016
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