My Daughter's Diagnosis Prepared Me for Mine
Being diagnosed with NMO has been quite the journey for me. It took 3 years after I initially began getting sick to officially be diagnosed with the correct illness and to be treated with the correct treatment. I’ve been a good advocate for myself, however I’d been blessed to have first-hand experience when my baby girl Amariyah was diagnosed with Pompe Disease on January 1, 2008 at the age of 5 months.
What is Pompe Disease?
According to Cleveland Clinic, "Pompe Disease is a rare genetic disorder in which complex sugar called glycogen builds up in the body's cells. The disease results from the deficiency of an enzyme called acid alfa glucosidase (GAA), which breaks downs complex sugars in the body.There is a 1 in 40,000 chance that you will meet someone and you both are carriers of a gene that can cause a child to have Pompe disease, which is a recessive trait and a child has a 1/4 of a chance to have the disease."1
Taking my baby girl to the ER
On New Year's Eve in 2007, I took my baby girl Amariyah to the ER at Cincinnati Children's Hospital because she had cold-like symptoms and severe congestion. She was given a chest X-ray, and doctors discovered the shadow of Amariyah's heart, which was enlarged two times the size of what an infant her age's heart should have been.
Saying goodbye to my daughter
After having an EKG done, a doctor in the ER recognized the rhythm of her heart and immediately determined that the problem could be the rare disease that very hospital had held clinical trials for: Pompe Disease. It’s been 13 years since I held my baby in my arms as she took her last breath.
The hardest decision I've ever had to make
13 years ago on July 1, 2009, I had to make one of the biggest decisions of my life and took my daughter off of life support, letting her pass naturally after doctors confirmed that she would not be able to breathe on her own without a tracheostomy. The doctors were afraid that she would not make it through that surgery because she was already really sick. Even though Amariyah was intubated, she wasn’t brain unconscious; she was very alert, and still her sassy, bossy self at times, but I knew she was tired; her eyes told it all.
I asked for guidance
I prayed to God like I’d done since I found out I was pregnant; I prayed for guidance to make the best decision that I could. I knew I had to place my fears to the side and do what was best for my baby girl. However I would be or feel after she passed, I would take care of then. I wanted my baby to suffer no more, and if the Lord wanted her to be here, then He would make it so. Amariyah was in the hospital for exactly one month before she passed, and I was right there along with her every night and day.
Harnessing my grief and transforming it into strength
My baby was definitely a fighter. My experience caring for my baby has helped me a great deal today! I had to know what questions to ask when it came to me having NMO. During every physical therapy visit I attended, I thought of Amariyah, and how I would take her twice a week while she was getting stronger, shocking her doctors! She worked hard, and I used her strength as my motivation.
My experience with my baby and her being diagnosed with a rare disease prepared me for my diagnosis with NMO, another rare disease. The ironic thing is the medicine the doctors wanted to give Amariyah to help her was the same infusion I was given when I was diagnosed with NMO in 2015: Rituxan. I had lunch with her genetics nurse, and she confirmed that it was the same medicine that would've been part of Amariyah's treatment.
Today, July 14th, was Amariyah's birthday: she would have been 15 years old. Time has definitely flown by, because I can remember the day she was born, and almost everything that lead up to the day of her passing like it was yesterday. I celebrate Amariyah’s birthday every year. I still buy a cake, and my mom and I, and sometimes other family members, join us at the cemetery where she was laid to rest. I place flowers on her grave and spend time there, and release balloons in Amariyah's memory.
Making my baby proud
There is not a day that goes by that I don't think about Amariyah. She is my only child, and I miss her so much. My baby Amariyah LaTrice is my motivation, and I just want her to be proud of her mom. ❤️
How long has it been since your initial NMO diagnosis?