These Siblings Fight MPS Like Warriors
Entering the COERD Centre of ORDI at IGICH, I was welcomed by the young chirpy voices of Ritika and Jhanvi (name changed for patient privacy reasons). Listening to their conversation they did not seem to be too happy about missing the Children’s Day celebrations at school as they had to come for the enzymes infusion that day. Ritika and Jhanvi, studying in class third and fourth respectively were diagnosed with a rare disease called MPS IV (mucopolysaccharidosis) for about two years ago.
According to their mother, Ritika seemed like a perfectly normal baby at birth. She showed some physical features that even doctors believed to have been inherited from her grandparents and hence thought would be rectified as she grew up. It wasn’t until she has caught a fewer when she was two years old that the seriousness of her situation was diagnosed or rather doubted. The doctor seemed to be more bothered about her physical appearance and the suspected defects that came along with it, than the fever. He immediately referred to a genetic test which came positive with Type IV MPS. Ritika’s sibling, who was one at the time, was declared to be a normal child then.
Mucopolysaccharidosis type IV (MPS IV), also known as Morquio syndrome condition in which the body is unable to break down long chains of sugar molecules called glycosaminoglycans. As a result, toxic levels of these sugars accumulate in cell structures called lysosomes, leading to the various signs and symptoms associated with the condition. Those affected develop features of MPS IV between the ages of one and three. These signs and symptoms may include abnormalities of the skeleton, eyes, heart and respiratory system. (Genetic and Rare Disease Information Centre)
The siblings’ parents were devastated. They felt helpless at the time due to the lack of licensed medicines in India. It was when Jhanvi was 5 years old that she was found with some issues related to her strength. She seemed to be unable to hold slightly heavy objects, like a glass of milk, without breaking it. This was when she had gone through a genetic test which came positive with MPS type IV.
Lack of medicines and awareness even among doctors forced them to take Dr. Meenakshi Bhat’s advice to migrate to the US where there are good treatment and available medicines. This decision was very hard on the parents; leaving to the US meant no returning home. They would definitely miss the support of the family, the amiable faces, and the very accommodating school that the kids were used to. This also meant that the siblings’ mother who had left her job earlier would have to lead a lonely life in the US. This dilemma was sorted when MPS drugs were licensed in India and the organization in which the siblings’ father worked offered to get the medicines available in Bangalore.
The treatment for the two siblings exceeds around two crores per year. It is financially impossible for even an upper-middle-class family to arrange for such huge amounts. Eighteen long years of experience in the same workplace of the siblings’ father came to their aid. The company transferred him to a US expatriate position enabling him to access the US insurance which helps him cover both his children’s medical bills.
The license for MPS drug was only recently available in India. The siblings started their medication in October 2017 and it is already a month now. On their second visit to the COERD Centre for their second infusion, they tell me that the centre is not a hospital to them. “They call it the patient home, not a hospital”, says the mother of the two.
Hand in hand with allopathy they also take homeopathic treatment which had helped the siblings when medicines were not available. The medication showed some improvements in the children and further supplements their treatment.
The siblings are brilliant in their academics, fast to make friends and very energetic to run around.
“Sometimes it hurts me when they complain that they can’t have fun like other kids their age, but I try to bring a positive attitude in them”, says the mother. Through thick and thin this family believes in surrounding themselves with positivity. It was very hard at first for the mother to accept that both her children were both affected by MPS. They have now taken in the positivity which gives them much strength. It was at hard for them to deal with the society and how it treats their children. “Everything that happens falls according to the plan of the One above and we trust in His plans,” says the mother.