Advocacy for Zayn’s life

When first-time parents Raeesa Bulbulbia and Mohammed Cajee envisaged the idyllic future they wanted for their son, Zayn Cajee, they never expected he would show them his bravery so early in his life.

At only seven months, old Zayn was diagnosed with a rare genetic disorder that causes progressive weakness to the heart and skeletal muscles. He was born earlier than expected and by the time he was finally home, while spending time with him, Raeesa saw he was not as strong as he needed to be. The concerned parents would take him to physiotherapists and regular pediatrician visits but were always met with no one taking their concerns seriously.

A brave boy, even as a baby

Raeesa’s concerns continued to not be taken seriously, at least not until Zayn was six months old. Coming back from work one day, she noticed something peculiar about her sleeping baby’s breathing and rushed him to hospital. There, they were met with a pulmonologist who immediately admitted him and after taking X-rays, found Zayn to have a huge heart.

At six months, Zayn, who only weighed 6kg, had a left ventricle that weighed 700grams. He was in heart failure, and had also developed bilateral lung pneumonia because of it.

He was placed on oxygen and then moved to a specialised hospital where there was pediatric high care, “I was not prepared for this, I had not realised it was that bad. But I think you know it’s serious when a pediatric cardiologist comes all the way from Pretoria to see you at midnight on Friday evening,” said Raeesa.

A doctor told the parents that Zayn’s heart was only working at 23% and in the same breath they were also encouraged to ‘start making Zayne feel comfortable.’ These words were met with complete confusion by the parents who, to their assumption at the time, had only gone to the hospital for what seemed to be a bad cough, not because their son was dying.

According to Raeesa, although her son was put on anti-failure medication, doctors looked no deeper into his symptoms. So the parents sought the advice of another doctor who suggested their son might have the a rare disease called Pompe disease. Based on this suggestion, Zayn’s blood samples had to be sent overseas as testing for this disease was not done in the country. He was soon diagnosed with classic infantile onset Pompe disease and in children, should this disease go untreated, could see them die within the first year of life.

The mother described Pompe disease as an inherited disorder caused by the build-up of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally.

Since his diagnosis as a baby, Zayn, who recently celebrated his seventh birthday, has, for every two weeks, received treatment for this disease – treatment which he now receives at home after his parents received training on how to administer it. “The drug really is a life saving drug. Though it is not a cure, it helps clear glycogen,” said Raeesa.

Every second Sunday Zayn’s parents take an hour and half preparing medication that has to run slowly through his body for seven hours. It is run slowly through him as there is a chance the body could reject it if quickly flushed into the body.

For Zayn, his life so far has needed him to be courageous, “I have had to be brave every day because I go to the hospital a lot, and I do not like the CT scan. I also have to be brave for the theatre,” said Zayn. One can also bet that he shows his bravery at school now that he is not being homeschooled. This year marked his first year of him going to mainstream school.

Finding a school was a challenge for the parents as many are not equipped to take in a child with mobility issues as due the disease, Zayn cannot stand or walk. They eventually did find a school that was willing to take him and the school has made some efforts to ensure an environment conducive to his needs.

Along with a regular school life, Zayn also has weekly visits to feeding, speech and physio therapists.

Life with Zayn has taught Raeesa that she really had not lived until this big life change, “Zayn has taught us to value the present; now we don’t worry about the future as we don’t know what it holds. We just really make the best of now.”

Even with all his challenges and differences, Zayn’s bold approach to life reminds you that he is a little boy who is eager to have fun, learn, and experience life with his family and friends by his side. He now knows how to play the piano. While playing My Only Sunshine he etches a heartfelt smile on his parent’s faces. He also cycles with Cycling Beyond Boundaries, a cycling group for children with mobility-related issues and they use adapted bicycles.

For Raeesa motherhood has been both challenging and rewarding, a sentiment she thinks all mothers can relate on. She hopes fellow mothers never let the opportunity slip by to celebrate their child at any opportunity, no matter their abilities, “Celebrate them and be on their side and never let society dictate what you think your child can and can’t do.”

Her message to healthcare professionals is to listen to parents. Whether they be first-time parents or not, they know their children and it should not take much to look harder into an issue or take a parents’ instincts seriously. In her opinion, had her concerns been taken more seriously sooner, her child could have started treatment earlier. “Though the ‘mom guilt’ is strong, I can wallow in what could have been.”

However, one thought she will allow for, is the seeing through of her son’s dream of one day seeing the Northern Lights – a dream the whole family hopes to see come true one day.

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