More schools for Muscular Dystrophy kids

"Indian Express" dated 11th July 2011

CHENNAI: A special school for children affected by Muscular Dystrophy has proved to be a ray of hope for parents. The school is operated by the Corporation of Chennai with the support of the Muscular Dystrophy Association, and enrollment has increased steadily in the two years since it opened. This has prompted the civic body to look into the possibility of opening more such schools. The story of the school is sweet success indeed for Dr V Viswanathan, a pediatrician and child neurologist, who has been pushing for a cure to Muscular Dystrophy for almost 15 years. He came up with the idea of a school to create a favorable environment for kids affected by the condition.

"Muscular Dystrophy renders some children unable to walk or even stand. But their brain functions like any other child. Though they might be able to cope, a normal school is generally unfriendly to their movement," says Viswanathan.He adds that because of their immobility, children with Muscular Dystrophy often have little exposure to the outside world. These children could need some special attention, and this school also provides that.

The special school for children with Muscular Dystrophy, which is located on the aptly named Model School Road in Thousands Lights, will be among the highlights at MYOCON, an international conference on Muscular Dystrophy, which is slated to be held in Chennai in January 2012. The school provides an option for parents of children affected by the condition, to go to school, instead of just staying at home. The school is now a second home to as many as 40 children with Muscular Dystrophy.

In fact, some parents have removed their children from normal schools to send them here. "My son, Hariprabhu, used to go to a normal school. He is good at academics, but then, this school is specially meant for children like him. So we brought him here, and he has been enrolled since the day this school was begun," says M Gnanasundari, who comes to the school with her son every day, from Ayanavaram.

The school operates with two Chennai School teachers who have been posted here from the start. Though the effort required to deal with children with special needs may be more, it is worth every bit, says N Gomathi, one of the teachers. "Well, the hours are shorter, it isn't a great deal. Most importantly, it is extremely satisfying for me to see these children smile. I remember how each one of them was when they joined us," she says. Gomathi recalls an accident her young son met with a few years ago, as a source of inspiration for her to carry on. "My son's leg was broken and he was bedridden for three months. That's when I realized what the parents of children with Muscular Dystrophy must be going through. At least I could look at my son, sure that he would walk again once his leg healed. These parents don't have that privilege," she says.

Support from political office bearers and officials has been the wind beneath the wings of the project, says Dr Viswanathan. And the concern of those in establishment is apparent.

The Mayor was abreast of what was happening at the school. "The response has been excellent. But since children are often immobile, travelling long distances to come to the school is proving to be a problem. At present, a van goes around to pick up the kids, but we are unable to cover every corner of the city. So we are considering opening two similar schools, one each in North and South Chennai," said Mayor M Subramanian.

This is being welcomed by the parents. "It will be easier for other parents to send their children to these schools. It will be of great use," said a parent.

Activities of MDAI in 2008

1. DMD Clinic:

A multi-disciplinary DMD clinic was started in August 2008 at Kanchi KamaKoti CHILDS Trust Hospital for the benefot of all the MDA India families. This was conducted every month on a Sunday, to make it convenient for the children and their parents to bring their children over. On this day every child was seen by a team of personnel including Neurologist, Cardiologist, Pulmonologist, Orthopaedic surgeon, Paediatrician, Physiotherapist and Dietician.

In this clinic, every child undergo a general health check up and enrolment which is done by paediatrician, complete neurological assessment by neurologist, complete cardiac work-up including echo and ECG was done by cardiologist, lung function assessment and muscle strength assessment done by physiotherapist, based on lung function test pulmonologist will do his assessment and give his advice. Orthopaedic surgeon will examine the children and advice for surgery or aids based on the patient's requirement. Dietician will give the appropriate dietary advice for the children.

So far 65 children have benefited from this clinic and we hope to continue this on a regular basis over the next few years with regular follow up assessments.

Personnel Involved in the multidisciplinary DMD Clinic were:

2. Influenza virus vaccination program:

DMD children are in the high-risk group for respiratory tract infections as their breathing muscles including the diaphragm and the chest wall muscles are weak. Therefore if they develop respiratory infections it becomes quite severe and life threatening at times. Though there are many causes for respiratory tract infections, the commonest is the Influenza virus. This is preventable by using the vaccinations. But it is an expensive vaccine and many of the families were finding it difficult to afford it. So we embarked on the idea of buying this vaccine in bulk and providing it free of costs to all members of the MDA India and others who needed it.

So far 75 children have benefited from the vaccination program this year and we hope to continue this every year well before the rains begin. The cost of each dose of vaccine at around Rs.600 per dose.

3. Muscle biopsy and DNA Analysis:

Muscle biopsy and DNA analysis are the diagnostic tests for confirming DMD. Some children who needed muscle biopsy or the DNA analysis for diagnostic confirmation were helped by MDA India for getting free testing done or were paid for by MDA India, when the families could not afford the tests. Presently histo-pathology laboratory facilities at Kanchi Kamakoti CHILDS Trust Hospital is being upgraded with all the necessary equipments so that routine histology and immuno-cyto-chemistry testing may be performed here itself in the future. These tests and biopsy to be performed under anaesthesia costs around Rs.10,000 per child.

4. Incentive spirometer:

DMD children will have difficulty in breathing as they grow older and their lung function will come down due to weakness in the chest wall muscles and diaphragm. This could be delayed by quite a bit by regular use of incentive spirometers. Therefore around 70 children were given incentive spirometers free of cost by the MDA India. Most families appreciated this gesture as the children enjoyed using them and found it very simple and useful. Our pulmonologist and physiotherapist demonstrated to our families the method of using them. These were handed over the commissioner of Corporation of Chennai – Mr.Rajesh Lakhoni at a small function at Kanchi kamakoti CHILDS Trust Hospital on the 31st Aug 2008. Each of the incentive spirometer costs around Rs.200 per piece.

5. Acapella cough assist devices:

These are imported devices used to help children who develop early signs of breathing compromise to help bring out the mucus and assist in breathing freely. Very useful in children with DMD. The main limiting factor again is the cost as each of these cost around Rs.3900. This year we managed to provide five numbers of these cough assist devises free to the needy families and only hope that we can provide more of these in the future.

6. Non invasive ventilation:

DMD children will have difficulty in breathing as they cross 12 years due to weakness of the respiratory muscles. Hence they will have increased work of breathing. This is the time when non invasive ventilation comes to rescue of such kids. MDAI have sponsored the BiPAP machine to Md.Usman, a 16 year old boy who was in need of this machine but could not afford buying this. We are grateful to Mr.Kalyanaraman who immediately came forward to donate the money needed to buy this machine for Md.Usman. Thankfully Md.Usman is doing well and is using this regularly at home, particularly when he goes to sleep. By the time children with DMD get to the age of 17 or 18 they invariably require respiratory support particularly at night. Each of these machines cost around Rs.1 Lakh.

7. Home ventilator:

Children with DMD get weaker as years go by and develop severe respiratory compromise and need ventilation using a machine to help them survive. We have therefore purchased a ventilator from Mr.Rajendran who got this for his son Master Yuvanesh a child with DMD. Mast.Yuvanesh unfortunately died due to respiratory failure at Erode (Tamilnadu). Presently this ventilator is on stand by for anyone who may require it. We will be providing this free to the family. Each of these ventilator machines cost around Rs. 2.5 Lakhs.

8. Wheel chairs:

Most of the children with DMD will not be able to walk after 12 years since their lower limb muscles become weak. So these children require wheel chairs both for mobility inside their home and outside. It also becomes mandatory that these wheel chairs are custom made for the child and is as comfortable for the child as possible as they spend long hours on these wheel chairs. Custom made wheel chairs are currently being made by an NGO by name WORTH TRUST for us but still each of these wheel chairs cost around Rs.6000 on an average.

FREE MASSONS club – Lodge Ashoka have helped us in big way during the year 2008 by providing all the financial assistance needed for the manufacture, purchase and distribution of around 20 wheel chairs. We in MDA India remain grateful to them and hope that they will continue to assist us in the coming years too.

9. Splints:

DMD children will be having toe walking due the contracture in calf muscle. To maintain the normal position of the foot, these kids need splints. Again this has to be made for individual specifications. Free Masons Club – Lodge Ashoka and others have kindly sponsored a good number of these and have been handed over to the families. Each of these splints cost around Rs.700.

MDA India Fun day 2008

Since the time MDAI began in the year 2000, we have regularly had fun trips with the families and this is an event that the families look forward to every year. It is very difficult for families to take these children out as many children are non ambulant and in wheel chair. Others have difficulty in climbing stairs or are unable to get in to a public transport like a bus or train where in the steps are too high. Therefore many children and families do not get the opportunity to go out and have a break. Hence MDAI has been organizing this MDAI FUN DAY once or twice in a year. This event also gives us an opportunity to update the families on what is new in research and also to discuss with the families their concerns and share their views amongst themselves. All in all it is an important event every year in our calendar.

This year - 2008, the FUN DAY was organised at GRT Temple Bay at Mahabalipuram on the 14th Dec 2008. Total of 48 children with one or two parents took part in the fun day. The entire trip was well planned and well organised.

The trip started from Dr.MGR Janaki ammal women's college, Adyar, Chennai in two buses and one van (from Jeeven Technologies) at 9.00 am. All the children and parent were provided breakfast in the bus itself. The Fun day venue was reached at 10.30 am, where everyone was received by cartoon characters and welcome drink. All the children were given welcome gifts also.

After a short time of relaxation, all the children started painting the cars which is meant for CAR RACE which will be happening in the evening. While the children are painting the cars, they also had face painting and hand painting done. Parents also had games during this time. After the car painting finished, the cars were allowed to dry. Then the children had fun games till noon.

Little after noon, everyone had delicious lunch with a great menu. Following lunch children were given a short time for relaxation to enjoy the breeze on the beach.

Then there was a great show of Ventriloquism by "Venki – The Monkey Show" done by Mr.Venkat. All the children and the families enjoyed the show very much since Mr.venkat, interacted with the kids and the families freely.

By evening, In the presence of the chief guests Dr.G.Kumerasan, Prof of Neurology and Mr.Sriram, Head of HR department, Cognizant Technology Solutions, the most expected and exciting event "The CAR RACE" was conducted by Mr.Anand one of the parents / volunteers. This car race event is enjoyed every year by the families a lot and in the end all the children were given "gifts" / presents by the chief guests. Tea and snacks was also served during this time.

By the dawn, after a short gap for refreshment, there was wonderful entertainment given by Mr.Mayilsami and Mr.King kong both well known comedians. All the children and parents enjoyed the program and laughed to their hearts content.

The MDAI Fun day 2008 came to end with mouth watering dinner. All the person who part in the fun day started off not only with their stomach full with a wonderful dinner but also with ever green and sweet memories in their mind.

All in all the MDA fun day 2008 was a big success and brought big smiles from all the children and the families. With that children left with a very happy mood but the MDAI members left the place with a little bit of trepidation as they need to organize an even better FUN DAY in 2009. We are happy that all this was done free for the families and children through the generous contributions of many philanthropists who have contributed varying amounts. We in MDA India will for ever remain grateful to all the philanthropists who come forward willingly to help us make the lives of these families much more meaningful and worthwhile.

Year 2007

It was a wonderful time for all those who participated in the Fun Weekend which was organized by MDAI on the 6th and 7th of October, 2007. There were nearly 50 children who attended the program with their parents and volunteers.

In this camp at Green Coconut Resort near Muttukadu, the children enjoyed various activities like painting, boating, car race, campfire, dancing and group games. They were also hugely entertained by Mr. Vadivel, the famous magician, Comedian Dhamu's mimicry and a jugglery show by Ashok and Anand.

It was full of fun and frolic for the kids and an enriching experience for the others, leaving everyone with a sense of eager anticipation for the next camp.

Year 2006

When the activities for a website launch and an outing for the muscular dystrophy affected kids were to be planned Mayajaal was the choice. It was a day most anxiously awaited for by the children, parents and the muscular dystrophy support group. The invites reached the families and the response was overwhelming.

Assembling and registering at SMF

The day started out at Sundaram medical foundation where the fresh banner with the new logo of our MDA and our volunteers set to greet and welcome the children and parents. The volunteers from the schools were busy registering and handing over the badges specially made for the kids and parents. After nice cold limejuice the children were ready to board the fun bus.

As the fun bus arrived-the one sponsored by Ashok Leyland, volunteers rushed to bus to have it decorated with colorful balloons .A luxury coach from Rathi mina transport and a Vidyasagar van commuted the team toMayajaal---on the ECR road. The children and the families had a great drive to MayajaalThe school children entertained the parents and kids on the bus with their songs and dances.

There were volunteers already set to receive the families coming directly to Mayajaal from Chengalpet, Kanchipuram, Pondicherry and Bangalore. The children were helped by the volunteers to the central dome area in Mayajal.Lunch was served on arrival and Dr.Lakshmi briefed the children on the activities planned for them for the rest of the afternoon. The parents were directed to the various scientific sessions awaiting them in the hall next to the play area.

The afternoon for the children started with the fun game -Passing the parcel. Every child had the opportunity to participate. The children were taken care and supported by the volunteers. With a nice big circular seating the game started off with claps from volunteers . For every kid getting out of the game a gift and a big applause accompanied. The school children who were volunteers did a great job helping the children participate and play. With around 65 children to start with the game became hotter as time passed and then with ten kids left the whole floor was clapping and applauding. The final winner of the game was carried by the volunteers and the three winners of the game beamed with joy.

The children then participated in other activities like painting, playing the in-house games at Mayajaal and a few musically inclined children went to practice the special song for the evening launch programme.It was heartening to see the children enjoy and play. The school volunteers did a great job helping the children. The children nearly forgot their parents and were involved in their activities.

By then, the scientific sessions were in their full swing. The session on nutrition and DMD was conducted by Ms.Bamini, Nutrition support services, SMF.This was followed by molecular diagnostics and duchenne by Sakthivel from the Molecular diagnostic facility team.The clinical aspects mostly the question answer sessions were conducted by Dr.Viswanathan and Dr.Vijay. Due to short of time the much awaited physiotherapy session could not be formally conducted though Mr. Suresh was surrounded by parents during snack time.

The snack time was also filled in with a mimicry show. The children enjoyed the snacks and an ice cream sponsored by an instant donor from Malaysia….

It was 4.30 p.m and guests for the evening started arriving for the web site launch function. All the invited guests were on time and the evening show started with a wonderful prayer song by the school volunteers. The little ones came forward to gift the guests with basket of flowers. With a welcome note from Dr. Lakshmi the programme took off. She conveyed the wishes of Dr.Vijayabharathi Rangarajan, Chairman and Director Community services,SMF who was unable to attend the function.Dr.Viswanathan the founding member of MDA briefed the gathering with the activities of MDA India.Mr.Durai, Director Administration; SMF introduced the guests to the gathering.

Mr.V.Narayanan, Director Willingdon Corporate foundation the chief guest of the evening formally inaugurated the website and addressed the parents and the gathering. His speech in Tamil was much appreciated by the parents.Dr.Lakshmi introduced the gathering to the site and explained the key inputs available on the site. The children's corner was a main attraction in the mdaindia.org site, not found in other muscular dystrophy sites world wide. The team was sure that the kids would enjoy the activities in the site. Special mention was made to Mr. Daniel for his contribution on the logo for MDA India .

The guests Dr.C.S.Jain from ONGC, Bro.Selvarajan from Freemasons conveyed their thoughts and wishes.Mr.Krisnamachari Srikkanth, former Indian Cricketer was the special guest and children were busy getting his autograph. Hoists and wheel chairs were donated during the programme.

The evening was spiced with the special song sung by the school volunteers and the children. It was a heart touching song sung in coordination.

The success of the day was marked with the overwhelming response from the parents, children, guests, well wishers and sponsors. It was a fun day filled with activities and new friends for the children; a day with lots of inputs for the parents; a thought provoking day for the guests and a contented day for the organizers. The programme ended with the national anthem and the children left the venue with carry home gifts, smiles and big byes!!!

This is just the start and as a team there are lots more to be done…in terms of science, education, reach and solace for the affected families.

Together we are making a difference!!

Year 2005

Musical Night with Malgudi Shuba 2005

Music is one good alternative for medicine. This proved right on this fine evening, when the MD children spent their time in rhythm to the beats and songs of Singer Malgudi Shuba and Co. Some children even had their voices on air.

Also present at the occasion was the Commissioner for Disabilities, Government of Tamil Nadu. He made his presence useful to the MD community by sharing with them the benefits for such families, rights reserved for them under the laws of the state and also on guiding the families on how to, whom to and where to approach for help. The occasion marked the distribution of four Wheelchairs to those who were in need of one.

Year 2004

Visit to the Airport and Fun Bus Ride 2004

Up! Up! And away!!! A thing most children would love to see as soon as they hear its sound. Yes, the Aeroplane. This year had the children have a closer look at their dream with the visit to the Airport. It was the first time opportunity for most of the children and parents onboard a plane.

The trip started from KKCTH, from where the children and parents were taken in a Fun Bus (also marking its inaugural run), specially designed Rams and Fork-lift to assist the wheelchair bound children. The Airports Authority of India personnel had us assisted in every respect in making the visit a most remembered event for all. The food for the day was sponsored by Hot Breads. It proved both informative and entertaining for the children. The closing touches were at back at KKCTH with a Magic Show by Magician Vadivel.

Year 2003

A night out with the Indian Cricket Team2003

The Men in Blue were all in colours to spend their night with the MD children at the poolside of Taj. With the heroes by their sides the children were in high spirits for the night. Truly, a Dream Come True for them. It was really great to see the Dons of Indian Cricket like, Sachin, Dravid, Kumble, Harbhajan and others in high spirits to mix-up with such wonderful children and parents.

Thanks to the goodwill of Mrs. Vasanth Raghuveer, Shakthi Foundation for making the meeting possible with the Indian Cricket Team. It was a pleasure to watch children and parents enjoying themselves present at the gathering. The occasion was quite thickly populated with almost 68 wheelchair bound children and a few more ambulant children along with parents attending the occasion.

Crazy Mohan's 'Jurassic Baby' Drama 2003

Laughter is the best medicine. To have a stage play by the Crazy Troupe as a fundraiser, etched these statements strong and deep in rocks. The play, ?Jurassic Baby? had the usual trademarks of comedy of Crazy Mohan and there?s no word to mention the joy that filled the children for nearly an hour or so. Thanks to Mr. Crazy Mohan and his Crazy Troupe.

The fundraiser, only second of its kind for the association, which was staged at Vani Mahal, Chennai, generated a good amount as Funds for the various activities of the association. The occasion also had Comedian Senthil and Director Bharathi Kannan among the visitors. Thanks to the Volunteers from Rotary Club of Madras (South), Department of Medical Social Work (SMF), and MDAI, for their commendable service at the occasion.

Year 2002

Humour Hour with Sekar by S. Ve. Sekar 2002

As said earlier, Laughter is the best medicine. That?s for sure, known to many. But, how many of you know about the one full hour of humour and laughter the MD children experienced this year with Actor/Comedian, S. Ve. Sekar. Perhaps, only the MD community does. The occasion was made possible at the TAG Centre, TTK Road, Chennai, by the combined efforts of Mr. V. R. Anil Kumar and other members of the Rotary Club of Madras (South), who also sponsored the dinner for the programme. Also present at the occasion were Evaluators for the CINRG Programme, Ms. Jill Mayhew and Ms. Jullaine Florence. The occasion marked the distribution of four Wheelchairs, and five Cushions.

Year 2001

Trip to Mahabalipuram Tiger Caves and Magic Show by Vadivel 2001

AbraCa..Dabra!!! Magic is sure something special to witness. And if it happens in a place of greater historic value, really very special. So, were the MD children feeling about the visit to Mahabalipuram Tiger caves where Magician Vadivel had the children bound with surprises and joy for more than an hours time. Thanks to the services rendered by the members of Rotary Club of Madras (South) and MDAI on such a memorable day of need. Special thanks once again to the Rotary Club for sponsoring the Lunch and Magician Vadivel for a splendid performance.

Musical Evening by Abaswaram Ramjhi and Troupe 2001

His name might sound Abaswaram, but not the songs that went on air at the musical evening, part of the fundraiser of the association, conducted for the MD children and association activities. Known in the film industry for his skills he became personally known to many MD children who had a great time with him and his troupe, which again was wonderful as its master. The evening also featured some talents from the MD children. The fundraiser was staged at Vani Mahal, Chennai. Special thanks to Mr. V. R. Anil Kumar and other members of Rotary Club of Madras (South), and MDAI members for making possible such a fundraiser of great need for associations of such sort.

2000

Venky the Monkey ? Entertainment Show and Inauguration of the Association 2000

After sowing the seed, it was time for the harvest. The idea of a Parent Support Group called Muscular Dystrophy Association India, was realised. 5th February 2000 marked the onaugural of the Association. And the inaugural had the following.

Verbal fun without moving the lips?!!! Don?t get astonished. Ventriloquism is what that made Mr. Venky, the professional Ventriloquist, to perform such a entertaining show for the MD children, which was enjoyed by both the children and the parents to its maxim. The occasion was attended in huge numbers by the MD community. Special thanks to the great minds behind the start ? Dr. Gunter Schaubrandt for kindling the idea, Dr. V. Viswanathan for taking steps further and Mr. V. R. Anil Kumar and other members of the Rotary Club of Madras (South) for helping in realising the thought.