My name is Meryl Sarah Mammen, 26 years old, daughter of Shibu Mammen and Marykutty Mammen. I was born on 13th December 1989 in God’s own country, Kerala. During that time my father was posted in Madras, Tamil Nadu. We were always on the move whenever my father was transferred to another work location.
As an infant, I had lactose intolerance and therefore had the inability to digest milk. So I was given substitute milk. And I was late reaching some of the developmental milestones.
After spending the first two years of my life in Madras, we moved to Vadodara, Gujarat as my father got transferred. There at the age of , I started schooling at Kendriya Vidyalaya. I was not a bright student and I excelled at only some subjects. Life was going on normally till I turned twelve when I first experienced the symptoms of Pompe disease. We used to live in a house with two stories. My room was on the upper level of the house. I was not able to climb the steps normally. I started to climb the steps like an old woman, slowly and with slight waddling. If I tried to run up the stairs it was very exhausting. I remember falling down the stairs while going down or up the stairs.
It was also during that time I was learning classical dance. And it was then, when I started to experience difficulty in performing some steps which required getting up from the floor. My dance teacher used to say that I was little late getting up from the floor even though I was not fat. I was really skinny as I was not good at eating food. I was very fussy and consumed very little food. I also remember feeding the pigeons my food which I did not like and my mother would get anger. Sometimes I would even stuff the food inside my desk at home and my parents would find out later on when they cleaned out my desk.
None of us knew that these were symptoms of something big. None of us knew about the disease. None of us made a big deal of the symptoms. Life went on by normally.
When I was fourteen, my father got transferred to Mehsana, Gujarat. It was only fours hours by car from there to Vadodara. I had to go to school by bus and my classrooms were on the upper levels. During this time I started to experience more difficulties. It became difficult to climb steps. I was slow and my back started to protrude out while climbing. Some of my teachers started to notice that I was climbing really slowly even when I was in a hurry. I even fell down the stairs at school many times. It was difficult to climb the stairs of my school bus like normal people. I had to swing on the railing to climb up. I would hold on to the bus railing put one leg up and then using the sheer force of my hands and one leg I would swing in an outward arch to climb up onto the bus. Others would find it odd.
It was also difficult to get up from the floor. I could not lift myself up from the floor without feeling exhausted or without touching and forcing myself against the ground. I would try to avoid as many situations as possible where I had to squat or sit on the ground. My running had become slow. Even when I was in a hurry I could not run fast. All of my friends and classmates started to become faster than me. I felt like they were all Olympic runners. I was the only one being left far behind. I did not realize it was just me getting slower. Because of these surmounting problems I would try to avoid physical exercise classes and sports. The only sport that I would do was karate. And I would go out during the evenings with my best friend to play badminton, table tennis, carrom, walking or for cycling.
During karate class, my teacher complained about the difficulties I faced in doing squats, bench presses, sit-ups and jogging. It was getting difficult to perform any of these but still he liked the fact that despite these problems I persevered. That was the only thing left for me to do as it was my parents who put me and my brother in that class. I hated karate at first because of all the training I had to go through and I was beaten up by your teachers or seniors during sparring. Eventually, I started to love karate. It gave the feeling that I will be someone like Bruce Lee, Jet Li or Jackie Chan one day. And I used to be a great fan of them.
Since playing and other physical activities were difficult I became better at studies and other activities. I was one of the bright students in class and I started being good at activities like singing, playing harmonium, drawing, arts and craft, etc. I had my music teacher come to my house for classical singing training. I started being involved in many extracurricular activities such as exhibitions, scouts and guides.
Due to my deteriorating condition and constant complaints, my parents decided to consult a doctor. We went to Ahmedabad, just two hour drive away, to see a neurologist. He asked me to get a biopsy done. So at the age of 15, I got my first biopsy done at Sterling Hospital, Ahmedabad. Unfortunately, the reports declared positive for Limb Girdle Muscular Dystrophy (LGMD). The neurologist also told me that diseases like LGMD do not have a cure. It was a devastating find. I came to realize that the disease is progressive and I would lose most of my movement in my limbs.
I was sad, disturbed and unhappy. My parents found out about a doctor in Anand, Gujarat who was a traditional nerve vedic. They started bringing me once every week for treatment at his place. It was a painful treatment and I did not like it much. I was relieved when I had to stop going there because of my 10th board exams.
During the summer vacation after my exams, my parents decided to bring me for treatment at the very famous ayurvedic centre in Kottaikal, Kerala. I stayed there for a month. I did not like this treatment either, because they had so many food restrictions and the medicines that I had to eat felt awful. I had been eating properly, without being very fussy and my food consumption was balanced and proper.
After a year, we moved to Delhi on transfer. Here also they had a branch of ayurvedic centre so I was put on continuous treatment for six months. It was difficult because I had to schedule it with my schooling. My brother and I started schooling at Kendriya Vidyalaya. We were in the afternoon session. It was a bit far from where we lived so we travelled by van.
My school life was becoming difficult because my condition was deteriorating. But my teachers and friends understood and were helpful so it was easy for me to cope. My class was on the upper floor again so one of my friends would give me their hand to hang onto while I tried to climb the stairs. If I was falling down they would lift me up. And getting up from the bench was also getting difficult. My teachers made arrangements for me to avoid situations where I had to sit down on the floor or do harsh physical training in the morning.
During this time, I did a preserved biopsy slab at Ganga Ram Hospital. The reports showed a probability of either McCardle or Pompe Disease. They said that I will have to go through another biopsy to get conclusive evidence. But we were reluctant as I was nearing my 12th class and I was not doing well in my studies due to the lack of motivation. I always thought that I should have fun while I can if I were to suffer the fate of becoming wheelchair bound. Why waste time studying when I should be enjoying every moment of life.
During the summer of 12th class, I had my first attack of breathlessness during the night. I was treated for panic attack at Kailash Metro Hospital. The doctors on night shift there thought I was panicking because I had a review test the next day, but I was well prepared for that.
I spent most of my first two years in Delhi on sightseeing and attending exhibitions. It was during this time that I realized I could no longer climb the sidewalks or board the bus. The sidewalks were pretty high and so were the stairs in the bus. My parents and my brother had to lift my leg and pull me up. It was exhausting for them.
My balance started to deteriorate too. Even a little push would make me fall. And to get up from the ground, I had to go on all fours and then push myself up with my knee to straighten out. It was embarrassing when you do it in front of everybody.
Somehow I finished with my 12th and I was unsure of where I should go next. All of my friends were either going for engineering or medicine. I hated maths and physics, so engineering was not my department. I also did not think I could pass medical entrance. But I still wanted to do something that I liked and I only liked Biology and English. So I wrote entrance for Bachelor in Computer Application and Applied Psychology. Eventually I got in for Bachelor in Computer Application.
College was near my house. My father would drop me at the college in the morning and in the afternoon I would come back home on a cycle rickshaw. After I started college, I became more serious with studies as I could not take part in any activities or fool around like my classmates. I had my good friends who were always with me and would help me. They saw me off on the ricksaw before going to catch their bus. They helped others understand my problems when we went somewhere. They seeked help from others when I fell down if they were not capable of helping me on their own.
By the end of my first year in college everything had become difficult for me. I had to ask my mother to join my college as my professor. I was not able to climb stairs and descending it without holding onto the railings was difficult. Getting up from the ground was close to impossible. It was also hard to get up from my chair.
By the second year of college, my parents approached the dean and chairman to build me a ramp. They complied and built a ramp at the back end of the college. Now climbing onto the cycle rickshaw was becoming difficult so I went home in the evening with my mother.
My parents got a house in the NCR region during my third year and college was a bit far. I was exempted from attending school everyday due to my difficulties. I only had lessons two to three times a week. By this time even ascending the ramp was getting difficult. If I ever needed the washroom, my mother had to come and help me. My mother had to help me up from a chair also. Upon request, the college they made me a special chair which was high enough for me to get up from.
After my graduation at the age of twenty, my parents contacted Ganga Ram Hospital to find out about any developments in the research of this disease. The doctors under Dr. I.C. Verma asked me to get a biopsy done. I got my second biopsy done at All India Institute of Medical Science and the conclusion was that I had Pompe.
After the diagnosis, I spent most of my time at home. I fell down frequently and getting up from the floor was nearly impossible. I had to crawl and drag myself to a sofa or a chair, rest on it, then get up from there or someone had to lift me up. My back started to curve inside and my stomach started to bulge out. My leg would bend backwards from the knee part when standing or walking. I started experiencing knee and back pain. Walking and getting up from the high chair was becoming strenuous. I needed to hang onto someone for support while walking. The symptoms were getting worse. I started to experience difficulty in straightening up from a bent position and had to push myself on the thighs or knees to straighten up. My toes swelled, blackened and blistered during winter. I would fall face down if I tried to bend forward while standing.
During that time, I suffered a second breathlessness attack. I was admitted to Intensive Care Unit for a night. I was tested for CO2 saturation level and Doppler was done on both legs for thrombosis. My legs were horribly swollen and just the simple task of breathing was extremely difficult for me. My appetite was also affected. It was tough to eat due to the pain in my stomach.
I was diagnosed with fatty liver after visiting a gastroenterologist and pulmonologist. Several tests were conducted to identify the right medication to ease my breathlessness and stomach pain.
Both my parents were working but they did not want to leave me alone at home because of the growing difficulties. They hired a maid to look after me. But eventually they found out that this was not working out because maids were not very good at taking care of people who require special care. So my mother resigned from her job to be my main caregiver.
Summer of the year I turned twenty-one, I started my Masters in Psychology as well as a certificate course in Japanese Language from Indira Gandhi Open University (O.N.G.C). It was a distance learning course and by the efforts of my parents I was exempted from attending any classes. I only had to go two days for practical or tests. Most of the other things like submitting assignments and collecting materials were handled by my father.
During December, at the age of 22, my father approached his company, O.N.G.C, to provide for my medication. It was a drug which was approved by FDA, USA and made available in India a year ago for treatment of Pompe. But this drug was not affordable for any normal working class person. It had to be borne by the government or company. His proposal was approved and I started receiving treatment.
The treatment is called Enzyme Replacement Therapy. My first dosage was administered in December 2011. Drugs were mixed into an infusion pouch and pumped into my body via intravenous drip. It was a long and painful process which required one day hospitalisation. I needed this treatment every 2 weeks.
My walking patterns worsened to a waddle and I could no longer walk without support. I sat up while sleeping as the breathlessness became a persistent condition. My stomach started to protrude out and the swelling, blackening and blistering of toes became unbearable. I could no longer lift my arms to comb my hair or pick up heavy books. I was not able to straighten my head after leaning back on an armchair. Bending frontward and then coming back to a straight position was difficult even in seated position. In order to stand I always had to hold on to someone else. Since walking long distances was impossible, I had to be confined to a wheelchair.
Six months after starting therapy, my breathing improved. I was now able to climb the two inch step to my house. I could comb my hair and lift books. I could straighten myself into a sitting position with greater ease. The greatest improvement was being able to walk a few steps without support.
I completed my Master’s Degree in Psychology specializing in Clinical Psychology as well as Certificate course in Japanese Language during the January I turned twenty-six. I could walk more than the previous year and rise from my bed into a sitting position by swinging down my legs. I could change sleeping positions on my own. Standing up from the high chair was becoming easier too.
As of today, I indulge in cooking, travelling, reading novels, playing video games, watching movies or anything on the internet, listening to music, drawing and painting. I feel more confident about my career and aspirations. I am glad that I can work towards my goals. I really hope I can keep focussing on my ambitions.
The journey till here had been really bad and difficult. There are still times when I feel like “Why did this happen to me? Why me? If it weren’t for this I might still be living a normal life like all others. I would have gone for a regular Masters degree in some good college and get a job. Going out with my friends would have been normal. And I wouldn’t have to worry about the future. I wouldn’t have to worry about burdening my parents by being so badly dependent on them for everything.”
But if life was that easy it would not have had been worth living. It was all these struggles that led to satisfaction and bonding of people when they came together to overcome these struggles together. For me these struggles were difficult to overcome but during times as these I always had my parents, my brother, my friends, my teachers, my relatives, sometimes even a complete stranger whom I have met on my way helped me.
People always tell me “God might have some kind of purpose for giving you and your family this task. He only chooses those whom He feels like are able to stand up to this trial and emerge victorious. He chose me and others like me so that He can make changes in this world to make it a better place for living. It might be as small as making someone realize how blessed he/she is to have something others might not have. Or it could be as big as doing something that might bring about a change in this world.”
We might not know what our purpose in life is but trying our best to do what we are supposed to do and being happy in what we have is what we should be aiming for. If we focus on what we do not have or try to compare with others, we can never be happy. Happiness comes from within, of this I am sure.