The disease my son is living with is one of the rarest in the world

The disease my son is living with is one of the rarest in the world; yet we are hopeful one day our son will be free from the disease and he will live a normal childhood like other children of his age: say Animesh’s parents

By LB THAPA FOR THE ROAMING POST

Animesh is only 7-year old boy. He is charming and ebullient. He has bundle of dreams, which he wants to fulfill in this life. He does also want to spend whole day playing with his friends, but he cannot. Yes, he cannot play with his friends. However, he can watch his friends playing from a distance, but he cannot join them. It seems god has been very cruel with him, because the disease he has been carrying has snatched away his playful childhood.

 Animesh has been living with Osteogenesis Imperfecta (OI). This disease is also known as ‘Brittle Bones’. This is a disease about which doctors are trying to know more. Due to lack of research facilities available in the country, the OI has become an elusive disease. Until now there is no definite cure of OI. It is believed that OI is a genetic disorder where bones break easily with or without any apparent reason. Doctors say OI is not caused due to little calcium or poor nutrition. It is actually caused by an error called a mutation on a gene that affects the body’s production of collagen found in bones, and other tissues. This disease is so rare that it happens to one in 20000 to 250000 births.

 “When Animesh was born, he was quite a healthy boy like his elder brother Abhinav. He was growing like a normal boy and we had no knowledge of any illness as he showed no symptoms at all. He was about 11-month old when his right femur fractured while playing with his elder brother. This was the first fracture that occurred on 1st April 2010. We took him to Manipal Teaching hospital for the treatment. The doctors put half hip spica and when the plaster was removed, Animesh was feeling better. A new x-ray showed improvement. We took our son to home and were happy that the plaster helped joining the bones” said Khim Lamichhane father, and Durga KC mother of Aminesh.

 But their happiness could not last for long. A second fracture in thigh occurred on 19 June 2010. This fracture, in less than two months time, had plunged the family into the state of melancholy. This fracture had planted a seed of doubt in the parents’ mind…may be he was suffering from a serious illness! “We did not take the matter seriously until the recovery from the first bone fracture. We thought the fracture could be the reason of carelessness. But the second fracture and that also in less than two months made us to take the matter seriously” said Durga KC, the mother of Animesh.

 A 3rd fracture broke his thigh on 3rd October 2010. This incident did make everyone hopeless in the family. The boy was rushed to Charak Hospital, now it is Gandaki Midical College Hospital. After a few days treatment, the boy was shifted to B & B hospital in Kathmandu. Doctors treating Animesh put new hip spica plaster to repair the fractured part. Doctors went through Animesh’s medical history and come to the conclusion of Osteogenesis Imperfecta (OI). Animesh diagnosis misled doctors as the symptoms of OI were not present in Animesh. His eyes color was not blue, he did not have respiratory problem and his hearing was also good. Hence, there was no reason to suspect about Osteogenesis Imperfecta OI.

After the plaster was opened Animesh was brought to home and he was getting better. After a few days rest and regular physical exercise made him standing on his feet. He even started walking with the help of a support. This was truly an encouraging sign of improvement.

 But a 4th time there was a fracture on his left femur. This incident had left the family devastated. The parents took the boy to the Metro City hospital for the treatment, where he was put hip spica cast on his leg. Within a month there was one fracture. This time it was a 5th time fracture of femur on 23 June 2011. Within 3 months there was one more femur fracture on 1st September 2011. The boy’s right femur got fractured on 6th time. There were more fractures during this time and a 9th right femur fracture happened on 13 November 2011.

 After 9th fractures the parents of Animesh decided to take their child abroad for the better treatment. But, the money was the biggest concern. “I wrote about 300 emails to individuals, organizations and hospitals and begged for mercy upon my son. One hospital in Spain was ready to treat my son for free of cost, but Spanish officials later refused to issue a visa for the free treatment. They said their country did not have diplomatic relation with Nepal and a visa for free treatment could not be issued”.

Khim’s effort got materialized when Shrieners Hospital for children, Montreal, Canada showed interest in the case of Animesh. The hospital was ready to bear all the expenditure on the treatment of Animesh. During this time Animesh was helped by many people. Khim, Animesh’s father, knew Dr.Howard Song when he used to visit Manipal Hospital’s library. Khim is chief librarian there. He arranged a room at Montreal for his wife and Animesh while staying in Montreal.

 “I’m grateful to a number of people without their help I could have never succeeded to get my son treated abroad. I am highly indebted to Natalie, Karolyn, Maria Barbero, Sue Montgomery, Alvin Song and Monica. Had these people not provided me help, I could never be able to take my son abroad for the treatment. I have no words to express about their kindness and generosity” said Khim with tearful eyes.

Animesh stayed in Canada with his mother Durga Lamichhane for about 5 months. During that time, Animesh had an operation and doctors placed two metallic rods to provide strength and stability to his legs. The age of those rods will be for seven years. The interesting thing about those rods is that they grow with growth of the bones.

 “Those metallic rods gave much more stability and strength to legs. Now my son can walk with a support. This is really a big progress in his health. To speak the truth I got more help abroad than at home. Doctors in Canada had advised us to take everyday hydro therapy for Animesh. While taking swimming I should be careful that there should not be more children around him. So, I should be beside him. I contacted many hotels and asked them to give little discount so that I can take my son for the swimming in their swimming pools. But they were not ready to give me reasonable discount that I could pay. Every day how I can pay Rs.500-600 for the swimming! This is out of my financial capacity. Nowadays occasionally I take my son for the swimming pool at Lakeside and pay Rs.600. I have also come to know about HRDC at Banepa where OI treatment is administered. In future I want to contact them and see how they can help my son” said Khim.

 Only a few months ago, Khim met with the parents of a boy who had come from Myagdi for the OI treatment at Manipal Teaching Hospital. “They were very poor and unable to bear the cost of normal treatment at Manipal Teaching Hospital. I managed a letter from an organization and asked them to go to HRDC at Banepa for their son’s treatment. Possibly they could get all free treatment. I was glad when they informed me that they were having free treatment at HRDC Banepa”.

 Possibly there could be many more parents whose kids might be suffering from OI. Those parents whose kids are suffering with OI should be united and fight against the disease collectively. Treatment facilities against OI in Nepal are inadequate. The government must help the parents whose kids are suffering from OI.

 It would be very good if some organizations or philanthropists come forward to help Animesh. The OI treatment is expensive and it cannot be treated well in Nepal. “We are not able to take our son abroad for the OI treatment. I will be more than happy if hospitals, organizations or philanthropists come forward and help in treating OI abroad” appealed Khim Lamichhane.

About the author

LB Thapa is a travel blogger from Nepal. He is also an author and journalist. His books have been published by Nirala Publications, New Delhi, India and Himalayan Maphouse, Kathmandu, Nepal. His books are available on www.amazon.com

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