Eight-year-old Purushotham Reddy wore a yellow T-shirt with the message “Happiness is for everyone.” His parents gave him a pet name ‘Happy’ - after the boy smiled at everyone when he was around one year old.
Happy was busy painting when the Precious Souls team visited their second floor apartment at Ayyappa Nagar, near Hudi, next to K R Puram. His father H Balakrishna Reddy works as a commercial manager with DTDC, while mother Anitha N takes care of him and his five-year-old sister Purvika Reddy, now headed for UKG. Happy is a second standard student of Diya Academy of Learning.
Diagnosed with one of the rarest disorders called Mucopolysaccharidosis (MPS Type IV or MPS-IV), Happy has already undergone two surgeries. (Wikipedia terms MPS as a disorder caused by the absence or malfunctioning of lysosomal enzymes needed to break down molecules called glycosaminoglycans - long chains of sugar carbohydrates in each of our cells that help build bone, cartilage, tendons, corneas, skin and connective tissue. People with a MPS have permanent, progressive cellular damage which affects appearance, physical abilities, organ and system functioning, and, in most cases, mental development). When Happy was about to turn one year, his father noticed a bend on his back, which triggered off a series of medical examinations in the little boy’s life.
“We took him to an orthopaedic and we were told that he has calcium deficiency. For six months, he was administrated calcium syrups and a monthly injection. We went for a review to the same doctor and after taking Happy’s X-ray we were told that it was not a calcium-linked problem. Most of the doctors are clueless about these rare diseases and it’s a guess work they do often,” Reddy said.
Happy was then referred to a neurology doctor in Narayana Hrudayalaya who ruled out any neuro issue. He, in turn, wanted the parents to meet an orthopedic doctor.
At the Manipal Hospital, the boy was shown to the Genetic Department since Balakrishna married from within the family (his uncle’s daughter).
“Finally, we got him diagnosed at MediScan Hospital in Chennai in 2008. It is here we were told about MPS and the different branches of disorders under it. Happy’s blood samples were sent to UK and it was confirmed he was a case of MPS-IV. Further medical exams revealed that his spinal cord was compressed,” he said.
In 2009, the doctors at MediScan suggested that the boy be operated upon for the spinal cord issue. But the reluctant parents refused fearing for the boy’s life.
“We we weren’t confident and we waited for a year and took the opinion of doctors at CMC (Vellore), NIMHANS and HOSMAT. We came back to the conclusion and Happy was operated upon in January 2010 at the Kanchi Kamakoti Child Trust Hospital in Nungambakkam, in Chennai. The compressed spinal cord was removed and a clip was fixed in its place. It was one of the most difficult periods in our lives,” he added.
Six months after the operation, a bend appeared below Happy’s right leg. Medical examinations revealed that the area surrounding his right leg stopped growing.
“In December 2013, we had to operate his right leg to put a clip. Today, my son has a chest that’s bulging forward also called as a pigeon chest. He has mild breathing problem. There’s no medicine available for MPS-IV in India. I have so far spent over `5 lakh towards Happy’s treatment,” Reddy said.
Happy’s mother joined the conversation saying that the family had a tough time in the first four years. “If you have a special child, you need to be self motivated to overcome the pain. You have no other choice, but to accept and move on. We have split our time so far visiting hospitals and temples. Both places offer us hope. We need to always cling on to our hopes and never give up. When the second child was on way, we ensured that the baby was free from similar ailments. Even her blood samples were sent to UK for tests,” Anitha, a housewife, said.
Happy loves riding on his improvised pedal car. The car also doubles up as a physiotherapy machine so that his legs get some strength. He has asked his father to get the car modified with an additional seat fixed to carry his sister, in addition to covering it from all sides.
Happy loves painting and his mother has preserved all his little works. Happy’s favourite pastime is photography and he operates from two digital cameras. He also uses his father’s mobile phone propelling his photography passion. He is tech-savvy and has a separate laptop loaded with his creative pursuits.
Today, Reddy is the State Coordinator of the Lysoe Somal Storage Disorder Support Society (LSDSS) - a parents’ movement to create awareness about rare diseases. “We support families who are like us. So many years we cried, but we realised that tears won’t take us anywhere. I decided to join hands with LSDSS to spread the awareness. Nobody knows the actual cause of these disorders. Lack of awareness is one reason why the treatment costs shoots up. The hospitals make us do all types of tests and they also refuse to accept a test done by another hospital. I have seen it all,” he said.
He strongly recommends not to marry from within the family. He also felt that schools should not chase away parents with special child. “Do not marry any of your relatives as the chances of having a special kid are higher. Schools need to come forward and give us a chance. In one year alone, Happy was denied admission by six to seven schools. We are not asking schools to give any special care to these kids. We are not asking for any fee concession. We want only a chance to educate them. Finally, I want the doctors to upgrade their knowledge levels,” he said.
Happy sits on his car joined by his family members for the photo session. He takes a close look at the camera that resembles a hi-tech weapon. He points towards his father with a message that one day even he would like to own a sophisticated one. His father agrees and the Happy family smiles.
m akm@newindianexpress.com
Stuti moves many
The City Express article which appeared on World Autism Awareness Day (Autistic girl types out: Understand us, we are not crazy; published on April 2, 2014) seems to have touched many readers. While we received many emails appreciating the girl’s inner voice, an educationist has decided to go one step ahead. Dr M Srinivasan, Head of Gear Foundation’s group of institutions tells City Express that he would soon meet the girl’s family to understand her needs. “Stuti has demonstrated to the world through the article that she has the wisdom to know the difference between what can be changed and what cannot be. The report very aptly portrayed it and encourages everyone to be positive and action-oriented. Hope there will be sustained efforts to help such souls to see the light. Stuti’s thoughts have touched many hearts and the Gear Foundation will not allow her thoughts to go waste. Her views are priceless and we have decided to preserve them,” Dr Srinivasan says.