Sanjana was born and raised in the picturesque town of Solan in the Himalayan foothills. Sanjana, her six siblings and parents constituted a large bustling household with never a dull moment. The children all attended the same school and there was healthy competition amongst them. Under their parents’ watchful eyes, the children were growing up happily.
First signal of a mobility issue
Sanjana’s brother who is 8 years her senior, was 14 when he managed to fracture a pelvic bone after a fall. He was recommended complete rest for 6 months. When he finally resumed walking, he could not walk normally any more. Soon after, Sanjana’s second brother who is 6 years older than her, started having problems sitting in a squatting position. While walking he started placing his hands on his knees for stability. In a few years both brothers were walking awkwardly with a waddling gait. Sanjana had also begun to walk a little awkwardly, placing her hands on her knees, but her teachers thought she was simply emulating her brothers.
1974: A mother chastises the doctor
Although at first the awkward gait of Sanjana’s brothers did not alarm her family, since the problem persisted and was, in fact, getting worse, Sanjana’s mother decided to get her sons examined at PGI, Chandigarh. The Neurologist diagnosed it correctly as a form of muscular dystrophy, although at that time (1974), the precise knowledge of limb girdle muscular dystrophies was not available. The doctor literally flung the diagnosis at them in the most blunt and cold manner possible. Within earshot of the two boys, he told the mother it was a progressive muscle-wasting disease with no treatment, and scolded her for bringing patients of such untreatable diseases to him. If the doctor thought the lady opposite him was a submissive housewife who could be bullied, he was in for a rude shock. Sanjana’s mother may be a homemaker, but she is a woman of education and confidence. The jolt she received upon learning about the incurable disease that would cripple her children shook her to the core; but she recovered her composure and gave the doctor a piece of her mind. Does he have no understanding of human emotions? Many mothers could have even lost consciousness upon hearing of this cruel verdict so abruptly, that too in the presence of their dear children. She made him promise never to treat another patient in this manner before heading back to Solan with a heavy heart.
Sanjana’s maternal uncle is also a doctor and he confirmed the diagnosis and prognosis of the doctor at PGI, Chandigarh. The family then decided to send the two boys to the Ayurvedic hospital in Patiala to try out various massages, treatments and diets.
Sanjana’s delayed diagnosis: the disease does not occur in girls
Around this time Sanjana also started experiencing problems climbing stairs and sitting in a squatting position. She was also sent to the Patiala hospital for examination. However, her symptoms were at their very initial stage, and since the only well-known muscular dystrophy at that time was Duchene muscular dystrophy (DMD), which is seen only in boys, the doctors thought she was normal and her symptoms were non-specific.
1978-1985: Sanjana’s mobility slowly declines
At school Sanjana was a very good student, and took active part in singing, dance and drama. But she could feel her dancing abilities declining. Being a perfectionist, she decided to discontinue dance rather than compromise on quality. Her walking speed was slowing down. Earlier it would take her just 5 minutes to walk to school. Now, the same walk took 30 minutes, which meant she had to walk alone as she could not keep pace with other children. In spite of the psychological toll this must have exacted, Sanjana was full of confidence and passed her school leaving exams with high distinction.
She took admission in Solan college to pursue B.Sc. in Biology. But there were practical difficulties. Those days public transport was not common in Solan and walking was the favoured mode. Sanjana’s college was 3km away from her home- a comfortable distance to walk, but simply too long for Sanjana. She had to discontinue college and decided to move to a residential campus for higher studies.
1985-88: Moved to Chandigarh for B.Sc. home science
At Solan, Sanjana had begun to feel low as she had to forego many activities due to her growing disability. The move to Chandigarh reversed all of that. Staying in the college hostel meant negotiating relatively short walks on plain surfaces to reach her class. She formed very close bonds with three of her classmates and this gang of four are friends for life. They live in different continents but meet every year to recreate the magic of college days. In college these three girls helped Sanjana in countless ways. Since she walked slowly, they would ask her to proceed ahead, while they followed, carrying her books and files, and her packed breakfast. They became very close to Sanjana’s family as well, landing up unannounced to savour Sanjana’s mother’s cooking. These three years of Sanjana’s life were very productive as she enjoyed the home science course and the college atmosphere.
1989- 1996: Start of professional life in Solan
Sanjana is a fiercely independent woman and before returning to Solan she wanted to equip herself with a skill set that she could use for income generation. After finishing her B.Sc. in 1988, she stayed on in Chandigarh for another year to earn a diploma in fashion design that included dress design.
Sanjana’s return to Solan after earning the diploma, coincided with her sister’s upcoming wedding. It was a golden opportunity for Sanjana to try out her newly acquired skills. She set to work designing the bulk of her sister’s trousseau. Her novel designs and skilful tailoring left everyone highly impressed, and overnight Sanjana became the sought-after designer in a town like Solan where unconventional designer outfits were practically unknown. She used the top floor of her house to open her boutique, carrying out not just the designing, but the cutting and stitching of each garment on her own.
In time she had enough capital to expand her enterprise. Her boutique, now called Stitch N Style moved to a regular shop. She hired several tailors, and other staff. To maintain quality control, she did the critical parts herself, like making the neck, and she did the final ironing and setting of the garment, ensuring that no garment left her boutique without her final approval.
This level of rigour and commitment was what drew satisfied customers to her; but it was taking a toll on her health as well. Gradually it was becoming difficult for her to stand up from a sitting position; so, she preferred to keep standing the whole day attending to customers!
1996- 2013: Progression of muscular dystrophy
Building up the boutique from scratch kept Sanjana so busy and satisfied that she hardly noticed the parallel deterioration of her muscle strength. Although her walking speed had diminished years ago, she did not have gait issues when walking slowly. In fact, she remained fairly independent right up till 2013. Every day, she would walk from her home to the boutique on her own without the need of any assistive device.
Occasionally she did trip and fall, but no untoward incidents happened, until one day in 1996 she took a bad fall and fractured her knee. The doctor, not understanding her underlying muscle problems, treated her like any other patient and put a hard plaster to immobilize her joint. After 21 days of rest, she found that she could not get up from a sitting position, and could not even take a single step without assistance. Sanjana’s mom, the lady with the iron will, helped Sanjana rise up from the bed and stand without support, even if for just a second at a time; gradually improving, till in a few days she could stand for 5 minutes. Meanwhile a wheelchair was arranged, and Sanjana’s mom took her to PGI Chandigarh for expert advice. Here, the doctor told them that the situation had aggravated due to the hard plaster, which should never be used when muscles are dystrophic. He advised her to stand and walk using chair support or a walker. Simultaneously Sanjana’s mother started giving her hydrotherapy treatment in a spinal bath tub at home. It involved lying in warm water for a period of time, followed by cold water in the end. After coming out and drying yourself, you had to be wrapped in a quilt till you perspired. This treatment slowly relaxed her muscles and after three months of treatment she was able to start walking with the use of a stick. Life slowly inched back to the previous routine, Sanjana regained her independence, only she now used a stick to walk to her boutique, and needed help to cross the road. It proved to her that muscle strength could, indeed, be recovered in muscular dystrophy. Hydrotherapy, with a liberal dash of will power helped.
After this episode Sanjana was extremely careful to avoid any chance of falling again. Yet, her muscle strength both in the lower and upper limbs was gradually decreasing and the level of dependence was increasing. This gradual pace of decline was manageable, until events unfolded in 2013 that precipitated matters overnight.
Ironically, although Sanjana had been managing the disease for over two decades, she had yet to receive a diagnosis. By 2006, she knew that her condition was clubbed under a group of muscle disorders called limb girdle muscular dystrophies (LGMDs), but the exact subtype had not been determined. Finally, in 2008, tests at Bombay hospital by Dr. S.V. Khadilkar (a leading neurologist interested in LGMDs) showed that Sanjana’s LGMD type was calpainopathy, due to mutations in the calpain gene. Subsequent DNA analysis showed that this mutation is especially prevalent amongst the Agarwal community to which Sanjana belongs.
About Limb–girdle muscular dystrophies (LGMDs)
LGMDs are a group of genetic diseases which affect skeletal muscles. They are all autosomally inherited (that is, all genders are equally affected) and they primarily affect proximal skeletal muscles (pelvic girdle and shoulder girdle). Due to degenerative changes, there is progressive wasting of muscle fibres, ultimately leading to loss of most affected muscles. The clinical presentation of LGMDs varies considerably. Some forms may appear early in life while others may be late onset. The specific muscle groups involved may also vary. Each subtype of LGMD is caused by mutation in a gene specific to that subtype. The LGMD types most commonly diagnosed in India include sarcoglycanopathies, dysferlinopathy and calpainopathy.
Calpainopathy (LGMD 2A) is caused by mutations in CAPN 3 gene that cause deficiency of calpain 3 protein. The age of onset can vary from early to late, and severity of symptoms can also vary. Facial and neck muscles are spared and there are no reports of cardiomyopathy.
Various founder mutations in CAPN3 gene have been reported from isolated communities all over the world. In India, members of the Agarwal community share two founder mutations in this gene. Affected individuals display common phenotypic features of toe walking and scapular winging (that is when the shoulder blade, or scapula, instead of lying flat against the back, stick out somewhat like a bird’s wings due to weak shoulder muscles).
Diagnosis of LGMDs: Initial diagnosis is based on clinical observations, and features like waddling gait, difficulty climbing stairs and arising from sitting position. Tests are done to check high creatine kinase levels in blood. In the past, routine diagnosis included muscle biopsy and immunohistochemistry. Currently, the less invasive and more definitive NGS is used for direct determination of the DNA mutation involved. Muscle MRI is also used to visualize the pattern of muscle involvement.
Treatments for LGMDs:
Nucleic acid-based therapies: AAV-based gene replacement therapies are being tested for various LGMDs including calpainopathy, dysferlinopathy and some sarcoglycanopathies. In calpainopathy, expression of the introduced gene in organs other than muscle, e.g. the heart, produced toxicity. This was tackled by using a muscle-specific promoter to express the gene preferentially in skeletal muscle. However, delivering the gene to all the muscles in the body is a major challenge. Since skeletal muscle accounts for roughly 40% of body mass, systemic gene delivery would require high viral doses. These could trigger potentially dangerous immune responses against the AAV viral vector, that could not only neutralize the therapy but could also prove toxic. This issue is being tackled by modifying the AAV coat, so the virus could preferentially enter skeletal muscle cells.
Therapies based on gene editing to correct the mutation, and RNA-based therapies are also in the pipeline.
Small molecule-based therapies: Amongst the small molecule drugs being tested are those that can reduce muscle fibrosis and inflammation, restore folding of the mutant protein to enhance its function, or boost autophagy to restore cellular function. Several repurposed drugs are showing promise in animal and cellular models. Nintedanib, a drug approved for lung diseases, improved muscle function in a mouse model of alpha-sarcoglycanopathy by reducing fibrosis and inflammation. Bazedoxifene, a drug for osteoporosis, had a protective effect in cellular model of dysferlinopathy, possibly by boosting autophagy. These require further testing in clinical trials.
Rehabilitation to preserve muscle function:
There is strong evidence that exercise training done under supervision can have beneficial effects in maintaining muscle strength. Caution has to be exercised to avoid potential muscle damage. High-resistance and eccentric training should be avoided in those forms of LGMD where structural proteins are involved, as it could cause muscle injury. Moderate intensity muscle training regimen is recommended in the early stages of disease to maintain the strength of trainable muscle. Aerobic exercise of moderate intensity (<70% of a patient’s maximal aerobic capacity) is highly recommended. Strength training should be performed in moderation and carefully monitored. Assisted exercise such as body weight-supported physiotherapy approaches and antigravity training are also recommended. Assistive training with the use of exoskeletons such as the hybrid assistive limb are also used.
Pulmonary complications are often seen in patients with LGMD as respiratory muscle strength is commonly compromised. The best management approach is nocturnal ventilatory assistance with ventilator support.
While the wait continues for disease-limiting treatments, rehabilitation approaches can aid to significantly improve overall disease outcome.
2013: Yet another fracture: acute dependence begins
By 2013 Sanjana was a well-known figure in the muscular dystrophy and rare disease circles due to her highly effective advocacy efforts to raise awareness and help patients. At a personal level she knew only too well that there was no lasting treatment available for her disease, and all one could do was to manage it with regular exercise, physiotherapy and maintaining a healthy life style. She had heard about a specialized physiotherapy centre near Kanyakumari and, in 2013, she travelled there to spend a few weeks undergoing their advanced exercise sessions. All was going well and by the fifth day she had begun to feel some improvement; then, all of a sudden, while positioning herself on the therapy table she suddenly lost balance, fell off the table and suffered multiple fractures of the femur. At first the physiotherapist assured her that he would make it heal, but when the situation did not improve in a few days, she was advised to go to a hospital in Tirunelveli.
Here she was advised to undergo immediate surgery. Until now she had not informed her mother about her fracture. The moment her parents learnt about the surgery they rushed to Tirunelvelli. The doctor took special care of Sanjana as he knew about her advocacy work, and made sure to use all precautions needed for muscular dystrophy.
Meanwhile, something short of a miracle happened. As Sanjana was worrying about how to organize funds for this unexpected expense of paying doctors’ fees and hospital charges, a person by the name Swami, whom she knew only indirectly as a friend of her close friend, appeared on the scene. Sanjana now considers him more than a brother. He quietly paid all the hospital bills and asked Sanjana not to think about it. Additionally, he took over other logistics like picking up Sanjana’s parents from Tirunelveli bus stop when they arrived from Solan. Everything fell into place and the surgery was done after Sanjana’s parents arrived. Although Sanjana was going through a tough ordeal, the generosity and care of people around her eased the pain.
In addition to Swami, the doctor (Dr Rana Guru) and the physiotherapist (Muthu Ganapathy), Sanjana received a lot of assistance from Amar Seva Sangam, an NGO working for people with disabilities. It is located in Tirunelveli district. This NGO is run by Sankara Raman, who is himself very severely disabled due to a form of muscular dystrophy. Both he and his wife, Sujata are wonderful people and very fond of Sanjana. They had met her several times in the camps organized by her in various cities. During the time that Sanjana spent in Tirunelvelli after her surgery they helped her greatly in rehabilitation.
The surgery itself was major, spanning five hours. After ten days Ganapathy, the physiotherapist, joined her and began to treat her for recovery. Physiotherapy was extremely painful at that point but essential to bring flexibility to the joints. Gradually she could stand and start taking steps. After five months, Sanjana finally returned to Solan, and Ganapathy accompanied her. He took care of her rehabilitation and ensured that she could stand for longer periods and walk inside the house with support.
Although gradually Sanjana recovered some functional strength, this episode marked a watershed moment after which her dependence for help with daily activities began to escalate. Not that it deterred her from achieving every goal that she had set for herself. And these were not simple goals. She was determined to not only learn all she could about the muscular dystrophy she and her siblings were suffering from, but also extend a helping hand to others in the same condition. This ambition took root in her around 1985 when she joined college.
1985-1995: Start of advocacy- Finding a mentor; building a community
The doctors Sanjana and her brothers had visited till 1985 were not interested in their rare condition as there was little knowledge available about the disease, and there were no treatments to offer. As Sanjana’s symptoms progressed, it was clear to the family that Sanjana and her brothers were affected by the same illness. Yet, the doctors did not take Sanjana’s condition seriously due to their preoccupation with DMD which is not seen in girls.
Whom were they to turn to? Even more than the disease per se, Sanjana was bothered about this sheer ignorance about what was happening to her body. A mounting restlessness was building within her to gain access to any and every information about muscular dystrophy. Help came in the form of Dr. R. Janardhana Rao from Hyderabad, who was publishing a magazine dedicated to muscular dystrophy. It turned out, Dr. Rao was a homeopathic doctor, also well-versed in Ayurveda. One of his sons was suffering from DMD. Another son was in USA where many studies were being conducted on DMD. He started sending all this information to his father, based on which Dr. Rao began to bring out a magazine called ‘Bridge’ to raise awareness about muscular dystrophies. Sanjana immediately connected with Dr. Rao through letters in that pre-email and SMS era. Her head was full of questions about this disease which she would pour out in her letters. Dr. Rao would respond by return of post and the correspondence continued for years. Sanjana found a mentor and Dr. Rao found a capable and ardent follower. He encouraged Sanjana’s family to form an organization to work for muscular dystrophies, which was soon to lay the foundation of Sanjana’s advocacy work.
First meeting with the mentor (1992), and inauguration of IAMD
Five years after Sanjana had started corresponding with Dr. Rao, she got the chance to meet him in person in1992. He had applied for a project for his own work, and the meeting was to be held in Shimla. Sanjana’s family invited him to Solan, and in his august presence they inaugurated their muscular dystrophy organization, naming it the Indian Association of Muscular Dystrophy (IAMD). The inaugural event of the organization was covered by the national daily ‘Indian Express’ where Sanjana’s grandfather happened to occupy a top position. Most attendees had never heard about muscular dystrophy. This function was an eye-opener as they learnt about the disease in simple terms. The press coverage further helped to raise awareness.
Seeing their commitment, Dr. Rao gave them valuable, practical tips to kickstart their mission. They should look for like-minded people, with interest and experience in social welfare and education, as team members in their organization. They should visit hospitals to collect contact details of other muscular dystrophy patients in their area. They should proactively meet these patients and learn about their individual journeys to guide them. For Sanjana, these tips became the mantra to follow. Dr. Rao was already 75-plus at that time, but Sanjana continuously pestered him with her problems and queries, and he continued to provide his patient guidance, both held together by the common bond of muscular dystrophy.
The beginning of advocacy.
Sanjana and her family now set off on the roadmap suggested by Dr. Rao. The first step of teaming up with like-minded people was relatively simple. Sanjana’s family were old-time, well-respected residents of Solan. They carefully selected the best-suited among their acquaintances, and soon there were ten to fifteen people lending their active support to IAMD.
Finding other patients of muscular dystrophy.
Sanjana visited the Solan General Hospital and established contact with the CMO’s office. Her sincerity and pursuit of a selfless objective, opened doors for her. Soon she had gained contact details of 22 people in the Solan area diagnosed with muscular dystrophies, although the particular type of dystrophy could not be diagnosed. The job, now, was to contact each of them individually. They lived in different corners of Solan. Some were in villages which could only be approached on foot in that uphill and downhill terrain. Every Sunday Sanjana and her brothers would set out to contact a new family until all 22 had been contacted. In the beginning many of them responded with suspicion but gradually they all opened up. The affected people they met were in the age range spanning 5 to 30 years. Hearteningly, except for some of the young women, most of the other adults were employed. Of these, one young man was working as a tailor since his feet were unaffected. His brother, however, was too weak to find employment. It seems his muscle weakness had aggravated after taking a so-called homeopathic medicine from a quack. In another family where two boys were affected, the family were convinced that a spell had been cast on them. They spent a lot of time and money going through puja rituals promised by pujaris to ward off the evil spell, with no success. Similar stories of people losing their gold, money and even their land to quacks in the hope of a cure were commonplace in the families they met. These tales infuriated Sanjana no end, as, out of desperation she herself had fallen prey to some of these extortionists, after which she had resolved to educate others and save them from such traps.
1995-2006: Spreading awareness through annual camps
Dr. Rao, the guiding light of IAMD, was himself profoundly influenced by the advocacy work being done by the parents of muscular dystrophy children in USA. He had access to a lot of this information and shared it with the founder group of IAMD, including videos of the US advocacy activities. The IAMD group learned how the US group (MDA) had roped in popular personalities as brand ambassadors which helped them raise billions of dollars to support MD research in USA. They were also hugely inspired by how MDA was conducting annual summer camps which served the dual purpose of providing a fun-filled environment for the MD children, while giving their parents and care-givers some much-needed break. These camps were run completely by a dedicated team of volunteers.
IAMD started following this model very quickly and in 1995 they organized their first annual camp, a tradition that continues till today. MD children from all over India attend these camps. They spend a whole week with the IAMD volunteers, while their parents can go back home and take a break. The volunteers take full personal care of every child, including bathing and feeding them. A lot of fun activities are organized for the children to make their stay a transformative and memorable experience.
The trend-setting first IAMD camp at Sadhupul in 1995
The first camp was held at Sadhupul near Solan. Dr. Rao provided them with contact details of MD children from north India, which helped them gather 32 participants in their very first camp. The objective of providing a fun-filled outdoor experience to the children was challenging but beautifully accomplished by the volunteers. Every outing, every activity, every picnic was carefully conducted. Wooden ramps had been made to help children on wheelchairs navigate the hilly terrain of Himachal Pradesh.
The atmosphere in the camp was permeated with fun, joy and bonding, leaving the children asking for more and eagerly waiting for the next camp. For many children it was a transformative experience as it boosted their self-confidence and self-image, itself a healing tonic for the body.
This camp had two other positive outcomes. Firstly, interaction with the children inspired many volunteers to come forward in the spirit of service, and several role models began to emerge. Second, and most importantly, it was the time when a virtual angel, Mrs. Urmila Baldi, joined the IAMD group to offer her services. She is the wife of the then Deputy Commissioner of Solan, and is a dedicated social worker. She volunteered for the camp and had no hesitation in performing the most menial jobs, inspiring all others to follow her example. Ever since, she has stood beside IAMD, providing the organization her rock-solid support in each of their milestones.
Evolution of the IAMD annual camps
The first few camps were held in areas very close to Solan. They were getting good press coverage and their popularity was on the rise. In 1999 Mrs. Baldi proposed to hold camps outside of Solan area, and they chose Dharamshala. She planned all the logistics and the number of participants grew to 90. Mrs. Baldi also helped to invite dignitaries to inaugurate the camps, which gave more publicity and awareness for the general public. Another addition to the camps was the distribution of wheelchairs to needy participants, enhancing their participation and enjoyment.
The first camp to be held outside Himachal Pradesh was in Hyderabad in 2003. It was a major event with press coverage from several leading dailies. Many people came forward to help by fundraising, preparing souvenirs, and information brochures, and managing the logistics. This was also the time when scientists became aware of IAMD through Dr. Giriraj Chandak, a distinguished biomedical geneticist at the Centre for Cellular and Molecular Biology (CCMB) at Hyderabad. He attended the camp, explained the science behind muscular dystrophies, and also conducted genetic testing. Other eminent doctors like Dr. I.C. Verma also graced the camp. Another high point of this camp was a press conference organized by the Agarwal Society which gave unprecedented coverage to raise awareness of MDs. The level of enthusiasm generated in this camp was so high that finally when Sanjana and her team boarded the 3am train back to Solan there were more than 50 participants at the platform to bid them farewell!!
The Hyderabad camp gave high visibility to IAMD and set the tone for future camps as participation increased and the MD community became more cohesive. The annual camps remain a major IAMD highlight to this day.
2010- 2016: The construction of Manav Mandir, a temple of compassion, care and rehabilitation
Ever since 1986, when the seed of serving the MD community first found fertile soil in Sanjana, it has been her dream to run a care and rehabilitation centre for MD patients. From her own experience she had seen that the prevalent healthcare system was mechanical. If a definite treatment did not exist for your condition the typical doctors took no further interest in you. Luckily, with her forward-looking family’s support and her own determination, Sanjana was not allowing the disease to overpower her. She was managing her condition with exercise, diet, and most importantly, with a strongly positive mindset that helped her cross every hurdle. She also knew that not every MD patient would be endowed with such luck, and she felt duty-bound to help those less fortunate than her.
The seed took a good three decades before the tree reached its majestic height. Sanjana was just a teenager when the first motivation arose in her head. By 2010 she had gained the maturity, experience and community support to revisit her dream. It still seemed a foolishly daring idea, but now there was a real need to expand their premises to even conduct their ongoing activities, in addition to the space needed for MD-affected individuals to meet, and receive rehabilitation support.
With Mrs. Urmila Baldi’s encouragement they prepared a proposal and submitted it to the Himachal Pradesh government to allot them a piece of land for setting up a rehabilitation centre. The proposal gathered dust for a while, but they kept resubmitting it. Finally, the government machinery moved and they actually received a parcel of land. Although this was a major victory and cause for celebration, it brought with it serious challenges which they were ill-prepared to tackle. How were they to design a building, and from where were they going to raise the funds? They had no professional adviser and they simply had no clue how to undertake such a project. After a year of indecision, in 2013 they were at the brink of returning the land to the government when the ever-dependable Mrs. Baldi came to the rescue. She introduced them to Shri Rajkumar Verma, an architect with the Sai Engineering Foundation. When he learnt about the purpose for which the building was to be designed, he offered to prepare the architectural design of the project free of cost, and even contribute to construction funds if need arose- the type of gesture that reignites one’s faith in humanity.
This was the psychological boost that IAMD needed. They now pooled their personal funds and asked for generous donations from their extended family and friends. With this corpus they set out to lay the foundation of their project. Simultaneously, they jacked up their efforts to raise funds from all sources. Around this time, they happened to submit a request to Satluj Jal Vidyut Nigam to donate wheelchairs to nine of their beneficiaries. The request was acceded to, with the condition that the wheelchairs will be personally gifted to the beneficiaries by SJVN during their Annual Day celebration. This ended up being an unexpected boon. The top brass of SJVN, gathered on the dais, witnessed the beneficiaries, children and young adults, arriving on their parents’ laps and shoulders, and leaving with beaming faces wheeling themselves independently on their powered wheelchairs. The dignity this simple gesture imparted was profoundly moving. The gathering had already seen a presentation by Sanjana, describing the vision and mission of IAMD. They now agreed to support IAMD for their noble cause, and that’s how IAMD received its first tranche of major funding. The dream was getting closer to reality. By 2016, the ground floor of Manav Mandir was complete, and the first rehabilitation camp for MD patients was held. Only 13 participants could be accommodated as each participant was provided with a number of therapies including hydrotherapy, individualized physiotherapy for each person, medical advice from in-house consultants, and mind-healing and rejuvenation sessions. The one-week camp left such a lasting impression on the participants and had such a cathartic effect that word soon spread about a virtual heaven for MD patients nestled in Solan.
2016- 2025: Vertical growth of Manav Mandir
IAMD had set the goal to provide rehabilitation and care facilities to a much larger number of individuals and hold camps at greater frequencies to serve the entire MD community. This required expansion of their space and infrastructure, for which funds were raised in a sustained manner over the years. Manav Mandir now stands tall as a five-floor building. Each of the additional floors were built through CSR funds by a slew of PSUs, including PFC, ONGC, REC and NTPC.
Today, Manav Mandir reflects the philosophy of their founder, Sanjana Goyal, who has perfected the art of the possible in every impossible scenario. Confined to a wheelchair with minimal remaining function of both lower and upper limbs, she has built a dedicated team to assist her in executing every plan to perfection. Little wonder that doors open for her as she leads by example. Manav Mandir is permeated with the same sense of positivity where participants learn to shed off their helplessness, and return home knowing that their disability doesn’t have to crush their dreams. May this be our guiding spirit under every adversity!
References:
Bouchard C & Tremblay, JP J. Clin. Med. 2023 https://doi.org/10.3390/jcm12144769 .
Khadilkar SV et al., Ann Indian Acad Neurol. 2017 doi: 10.4103/aian.AIAN_81_17 .
Garza, R. (2026, October 1). Biology Insights. https://biologyinsights.com/emerging-treatments-for-limb-girdle-muscular-dystrophy/ .
Siciliano G et al. Acta Myologica • 2015; XXXIV: p. 3-8
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