My name is Zahra, which means beautiful, bright, brilliant, and shining in Arabic. My papa and mama would often say, I was all this and much more. My life has been only about love and play, and this is my story.
I was born on 26 November 2018. I emerged from mama’s belly at 4:13 am. The nurse handed me over to papa, who was too excited to cut the cord. His only endeavor in life was to keep me smiling. I still remember his first words to me were, "Let's go get some pancakes for breakfast." Even though it did not get me smiling right away, it laid a solid foundation for the dad jokes that were to follow. On the other hand, mama couldn't stop crying (tears of joy, I guess) and kept asking me, "are you for real?".
Life was normal for a while. I slept during the day, ate and pooped a little, and kept my parents awake at night, the routine we kids follow to make adults go crazy. I was pretty social and enjoyed playing with other kids, adults (who behaved like kids), and animals. Fun fact: I was petrified of dogs (including puppies), and for some reason, they found me quite approachable. I used to cling to papa and bury my face in his neck every time I spotted one.
In July 2019, when I was eight months old, we moved to Adelaide, Australia. It was a cold winter, a different time zone, and India had lost the semis in the cricket world cup. A few days after my arrival, I noticed a slight change. My eating and drinking had reduced considerably. Every time mama tried to feed me, I kept barfing. It felt like something in my throat was blocked, and I couldn't get the food down. Mama had an instinct for these things. She knew something was wrong. Did I also mention I couldn't crawl or stand when most of my peers jumped on and off a bouncy castle? Time was passing, but I appeared to be regressing.
We finally went to a pediatrician who ran some blood tests, and they all came back normal. He asked me to start with some Physiotherapy and Speech therapy. They were pretty intense, but I began to show gradual improvement.
In December 2020, a few days after the Physiotherapy session, my body started to show some unforced tremors. My hands kept shaking sporadically, I couldn't sit without support anymore, and my ability to bottom shuffle progressively ceased.
The pediatrician recommended an MRI of my brain and spine. The results of the scan were expected in two weeks. According to mama and papa, each day felt like a month. The doctor requested a few more days to report the diagnosis at the end of those two weeks, given its rarity and complexity. On 19 January 2021, I was diagnosed with a life-limiting Surf 1 mutation of the Mitochondria, which was so rare we were told only three people in the world had that kind of mutation. That is just how special I was. There was minimal data to rely on, and the focus shifted to management with very little treatment.
My file was immediately transferred to the Metabolic and Palliative care team at Adelaide's Women and Children's Hospital (WCH). I had the best medical team around me and was very fortunate to have received the care I did. Amidst all this, mama and papa learned to laugh to keep from crying. I was so proud of them.
My struggle with eating and drinking continued. For lunch, I was down to two slices of orange, and dinner was a yogurt ice cream or a couple of nuts. My parents were initially against TV or phone while eating, but they ultimately gave in, hoping I would eat something. Spoiler alert: I didn't, or rather couldn't. I was losing weight quickly and was inching closer to malnutrition.
A swallow study in May 2021 revealed I was aspirating on food and water. It was essentially due to the low muscle tone in my body. The palliative team at WCH advocated for peg surgery. In June 2021, I bravely underwent surgery and was in the hospital for seven days. It wasn't that bad; I had the play area next to my room and special attention from the doctors and nurses. I no longer had to strive to eat and drink and was fed through a tube which gave me this sudden burst of energy I never thought I had. Papa found it challenging to keep up 🙂
Life changed for the better since. Now I ate what, when and how I wanted. We took short trips since we couldn't travel much due to the pandemic. I visited my cousins, beaches, hills, cherry and strawberry farms, picnics, and birthday parties every other week. Papa even took me to daycare twice a week to make some new friends. He never left me alone. Life was good.
Over the next few months, I also continued with all kinds of therapies, including occupational therapy, physiotherapy, and speech therapy. Even though they were not as strenuous, mama said they were necessary to keep me going. Some of the therapists and I even became good friends. They brought new toys and tricked me into pushing, pulling, and throwing them to build up my muscles.
However, as they say, the best things come in small packages. Three to four months post-surgery, my speech had started to slur a bit. My tremors had increased, and there were short pauses in my breathing. Special equipment such as chairs, tables, and prams was ordered to help me. Despite all this, I never lost my beaming smile (or so I have been told). I was going to live a simple life. I didn't have any big plans; I just wanted to live happily.
Beginning of 2022, we were close to moving into a new house that my parents had built for me. Mama had even selected the bed and furniture for my room. Papa kept pushing the builder to get it done ASAP. They both had a hunch, I guess. We were packing boxes every day. They were tired, but one of them was always by my side. I was starting to get tired quickly, sleep longer than usual, and pauses in my breathing became more frequent.
Finally, on 18 March 2022, we moved into the new house. It was exquisite. Mama kept asking me, "Zazu, are you happy?" I just hugged her and said, "I love you and thank you for the new house." She burst into tears.
Over the next few days, I was pretty unwell. I couldn't sleep or sit and was generally quite irritable. Mama and papa tried everything; they took me to the new park, read books, sang and danced, went on coffee dates, went shopping, and walked on the beach. However, I wasn’t in the moment; I was beginning to lose myself.
One fine morning I vomited, and my heart began to pound real fast. My parents rushed me to the emergency room. The doctors and nurses deploying every resource and breaking every rule. I was slowly losing consciousness and for the first time in three years, I could sense mortality. There were all sorts of wires attached to my body and doctors came in every one hour to check in on me. They could feel my pulse dropping and pauses in breathing were longer.
In my last few moments, I was in mama's lap, comfortable and warm with papa by my side, running his fingers slowly through my hair. Both were crying (tears of pain, I guess), mama said a small prayer, and after a few breaths, my heart stopped beating. Her last words to me were, "Zazu were you for real?”
Even though I had passed, everyone who came to visit me at the hospital noticed I had a smile on my face. It was a fitting end to a life that had been only love and play.
See you on the other side.
In memory of Zahra, her family and friends are walking 35km in The Bloody Long Walk in Adelaide on Sunday 30 October.