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Boiled Beans on Toast. . Theater Play – Jan 30, 2015

The new year at MDCRC began by a collaborative effort with the Rotary Clubs of Coimbatore. It was
an English theatre play named “Boiled Beans on Toast”.  It was screened  on  January 30, 2015 at 7 Pm. Venue: PSGCAS auditorium. Tickets were sold at  Rs.300, 500, 700 and 1000. The sale proceeds of the tickets would go to MDCRC to fight Duchenne. Though it was a new event for MDCRC to tie up with Rotarians to carry out a fund raising event, it was a great challenge and a thrilling entertainment.

 

Multidisciplinary Clinical Care – March 2015

DMD does not have a cure and it is the only the management which enables the best results for the children. Multidisciplinary clinical care was held where children came for a routine examination along with their care givers or parents. The patients were scrutinized by various doctors.

They underwent the registration process followed by all the diagnostic tests and then various assessments by different doctors of varying specialties like the cardiology, pulmonology, pediatrics, neurology, orthopedics, physiatrist, physiotherapist. In the middle of the session for relaxation, there was a story telling session too in order to keep the kids cheerful.

The children underwent review session by various doctors.  All the assessments were carried out for all the children and finally reports were maintained. Each of the doctors visited from various hospitals and had spared time to visit MDCRC to assess the Duchenne children. Hence, it was more so to assess the progression of the disease and as per the international guidelines, the children less than 10 years need to be assessed only once per year whereas the rest need to be assessed twice per year as the progression of the disease is much more faster. Hence, to conduct a multidisciplinary care is highly essential though it works out very expensive to bring the doctors all together to carry out the session. Twenty children were assessed during April 2015. All these children are on Ayurveda medications too. The assessment was more to understand the impact of ayurveda medicines on the child on a quarterly basis.

 

Genetic Counseling – April   2015

Genetic Counseling session provides complete information about the DMD disorder, its causes, symptoms & prevention. The inheritance pattern of the disorder & the importance of carrier testing for female relatives in the family is more useful in preventing this disorder in future generation. Awareness regarding the importance of physiotherapy for better quality of life and the Multidisciplinary Clinical Care sessions conducted at MDCRC.

Two families attended Genetic Counseling (GC) from Tirupur and Coimbatore on April 4, 2015. The GC was conducted for families with children who had results with positive testing for the first level and positive for the second level of testing also. Both group and individual counseling was offered to the family. Counseling was offered based on their Individual family pedigree.  The counseling sessions brings to light the future vision of the parents or family and a good understand followed by acceptance of this genetic disorder. Counseling was conducted at MDCRC premises itself under the able guidance of Dr. BR Lakshmi.

 

World Yoga Day – June 21

One other initiative very close to Dr.Lakshmi’s heart is to integrate Yoga as part of the services offered to children and parents and the apt event was to observe the International Yoga Day (IYD), June 21 and take things further. Apart from all this, MDCRC wishes to unfold the science behind yoga and Duchenne Muscular Dystrophy. Keeping this in the forefront, the celebration on IYD marked the beginning for us to expose all our patients and parents to yoga to feel the difference.

MDCRC celebrated the IYD on June 20, 2015 in its own colors. The venue being Conference Hall, Kurinji Hospital between 10 am to 12 noon.The program was honored by 3 chief guests who cherish the essence of yoga in their lives, namely Mrs. Mohanasundari J, MD, Sharp Industries, Coimbatore, Mr. Srinivasan, MD, Triangle Clothing, Coimbatore and Dr. KC Ramaswami, Chairman, Kurinji Hospital, Coimbatore. The major chunk of the session was handled by Mr. Shankar, K. Head, Integrated Yoga Centre, Coimbatore. Dr. Lakshmi welcomed the gathering and declared open the IYD infusing lots of positive thoughts in the minds of the children affected with DMD and families on how Yoga could make a difference in their lives.

Mrs. Mohanasundari delivered the keynote address where she emphasized about the importance of breathing and explained on the sudharshan kriya methods and the change it has made in her life. Mr. Srinivasan shared his personal experiences on yoga changed his lifestyle from a hectic one to a smooth sailing one wherein he could find lot of inner harmony. Dr. KC Ramaswami, felicitated the gathering by adding of encouragement and the faith that he has towards what more MDCRC can offer to the children affected with DMD.

The session was taken over by one of the most experienced yoga practitioner, Mr. Shankar who had planned various activities. The parents were engaged in few simple breathing exercises including pranayama and lots of tips on how to communicate and perform yoga with the children affected with DMD. The two hour long session ended up with high tea served and feedback from the parents of MDCRC who thanked the organization for what it has been doing and were eagerly looking forward for the Yoga sessions for their children. The programme ended with the complete team doing Thoppukarnam and dispersing after National anthem.

 

Multidisciplinary Clinical Care – August 2015

Since Multidisciplinary Clinical Care (MD care) is a routine process, once in 3 or 4 month the children are assessed by all the doctors of various specialties at MDCRC. Beginning with the registration in the morning followed by diagnostic tests, assessments by different doctors and amidst all this is the most enthusiastic moment for the child which is the story telling session.

Most of the children who were present at this MD care were on ayurvedic interventions. Following the August MD Care a comparative study was done to assess the impact of alternative medicines on the Duchenne children. Twenty 24 children attended the care session on two consecutive days.

 

September 2015

On September 22, 2015, another set of three families attended the counseling.  The lab team  conducted the counseling for the parents whose children were tested positive for  this disorder. The team comprised of  Mrs. Kalpana, Ms. Nithya, Mrs. Agila. Both the first level group & individual counseling was offered to parents. Counseling was offered based on their Individual family pedigree.

On September 24, 2015, another set of four families attended GC who were all from the Coimbatore district itself. Proband first level positive cases were considered.  After the individual conseling, the carrier samples were drawn from the mothers and sisters with informed consent. On this day, the individual counseling was given following the group conseling. All the parents came up with several questions which made the session very interactive. For some of them, even the blood sample was drawn to do the carrier testing.

 

WORLD DUCHENNE AWARENESS DAY – September 6, 2015

The gala event of World DuchenneAwareness Day (WDAD),was celebrated by MDCRC, Coimbatore on September 6, 2015 at Jennys Club lawn. It was indeed a pleasant evening from 3:30 pm to 6:30 pm. The occasion had invited delegates from various walks of life who would inspire the children and parents to the maximum by inducing positive thoughts and high spirits.

The little heros of MDCRC, were considered as the chief guests who were warmly welcomed by fruit punch and cookies of various kinds. The pre program event was made very interesting with amazing balloon shows and decorating their individual wooden cars with stickers. Each kid was engrossed in sticking colorful stickers on their wooden cars with their names on it to make it look unique from each other.

The clock struck 4:30 pm, Mr. Shankar Yoga sir, started announcing for the program and the formal Duchenne Awareness Day program began with a prayer song followed by the Welcome note read by Mrs. VeenaPathy, close associate and well wisher of MDCRC. The guest of honor was Mrs. Swarnalatha who gave a very inspiring speech followed by a song for the kids. She stunned the audience with her sweet melody. Next, the special address of the day was given by Padmashree Dr. Krishnakumarji , Chairman, AVP, Coimbatore. With lots of prayers he along with Dr. Noorul Amin, physiatrist, Government Hospital, Coimbatore let out a huge bunch of balloons into the air with several prayers of the kids written to reach the divine and hoping it would bring their prayers true.

Next program in the agenda was the magic show. Mr. Super Raja, magician from Bavani came all the way to entertain the kids and all the children were totally in a different world for a few minutes. His show was so fascinating that it drew the attention of every individual. The kids were enthused with the next program which was the car race. Each kid had made his wooden car very decorative and let it run down the ramp. Among the three cars, the one which was first was chosen for semifinals and then the grand finale. Three cars were taken as the prize winning cars, Master Kavin won the first place, second prize was bagged by Master Ravishankar and third place was won by Master Sivashankar.

The event ended with refreshments where the parents and children enjoyed interacting with each other. The media persons interacted with the kids and parents found that the children were overjoyed at the fun filled event. Some kids left the place saying they wanted another event very soon so that they could be with their friends and have a great time once in a while. We are extremely grateful for all our patrons, guests, parents and children who made the event a wonderful one. Thank u all for your support.

The request from parents was…can we one such event every month. Yes , such events peps up the spirits of the kids and families with Duchenne, bring in a lot of contentment to the people involved and we give the taste of sharing to young college volunteers !! Together we make a difference !

 

October 2015

On October 15, the MDCRC lab team conducted GC where families from different parts of the state had attended like Coimbatore, Tirupur and Erode. The GC was given to the proband positive patient’s families with both the group counseling followed by individual counseling. After Individual Counseling Session, 5 Carrier Samples were collected with Informed Consent Individual Counseling was offered based on their Individual family pedigree.

 

November 2015

Genetic Counseling Session was held at DDHS Office, Pallaiya Nattanmai Kattadam, Opp. to GH, Salem at 5th Nov 2015. This session of GC was a part of the outreach program.  About 16 families were called for GC, but only 13 families attended. Three of the families were from Namakkal, 9 families from Salem and one family from Tuticorin. Counseling was offered in group & individual based on their family pedigree. After Genetic Counseling session 9 carrier samples were drawn with the informed consent for carrier analysis. Good feedback was obtained from each family.

 

May 20, 2014

Art Collection

MDA way back in 2012 had conducted a fascinating MD Art Collection where the children participated in bringing out the hidden talent in them. They portrayed several interesting pieces of art in both color and black white which was a feast for the eyes. It was a great event. I wish our children who are bound to homes would feel very encouraged if any of the organizations could sponsor an art collection for our children. Perhaps they can make some paper krafts or just sketch something or anything under the sky they find interesting they can lay their hands on to bring out a masterpiece which would be showcased in the city of the sponsored. For further reading log on to http://quest.mda.org/categories/mda-programs.

 

June 28, 2014

Amusing Shoes For Muscular Dystrophy Kids

Here is a surprise for all the children using AFO (ankle foot orthosis) braces. It has always been a disappointment for children that they could not wear shoes over their braces. Now my friend’s little son who wears AFO braces happily squeezes his feet into a new type of tailor-made shoes along with his braces. He is so excited that he can wear shoes and look alike the other children in school. If you would like to share this info with people who would benefit from this, please ask them to log on to www.hatchbacksfootwear.com. I am sure both the child and the parents will be happy using the specialized shoes which look very much similar to the regular shoes. Get set and go….

 

August 1, 2014

Wheelchairs Would Be A Blessing

Hi everybody…. We know handling the physically challenged children is very sensitive and it becomes a challenge as the children grow older and they put on weight. Most of the parents often feel that a wheelchair at home would be a blessing so that the children feel more independent and they also feel delighted. Unfortunately, for the children who cannot afford a wheelchair they find it very difficult to handle the child. So, I humbly request the generous hearted fellow readers of this blog to lend a helping hand by wheelchairs for the children. Please get in touch with www.mdcrcindia.org.

 

July 10, 2014

View Of A Volunteer

Hello there!! The best gift God has bestowed upon me is to place me at a pedestal where I can help my fellow citizens. I was pleasantly surprised by looking at the children on every multidisciplinary care conducted at MDCRC, Coimbatore. Each of them was so cheerful and filled with enthusiasm. They are overflowing with energy which radiates into us. MDCRC provides various care services like physiotherapies, psychosocial counseling, pediatric, neurologic, orthopedic, physiatry, cardiac and respiratory consultation. Each child is consulted by doctors of each of the above specialty. Most striking feature is MDCRC offers everything free of cost for the patients. The children were entertained with a story telling session during the afternoon and continued consultation later. By evening it was all done and we bid goodbye and transported the children to their respective vehicles to go home. From the moment they enter MDCRC till they go home, it was such a wonderful experience to be with the children all day. At the end of the day, feel so grateful that I have spent my day in a very useful way at MDCRC as an active volunteer.

 

July 30, 2014

Adolescence And Physically Challenged

There is a blanket of grief spread over the adolescent boys with DMD. As the children approach their early teens, they become more conscious about themselves and the surroundings. They have a deep sense of shyness and feel creep into their cocoon. They do not want to come out of their homes, don’t want to socialize, sometimes even don’t come out of their rooms at home. They are comfortable when left alone and contented with themselves. They realize they are not in par with their peers and find it very difficult to take it up as a challenge in their lives. So, I suggest we must help these children by motivating them that they are in no way less than the others and are in par with their peers. Rather, at times their IQ is higher than their school going normal peers. We must talk to them, motivate them, encourage them and make them feel they are important to us. Let us join hands to volunteer this cause to see many more smiles around us. If there is anything you would like to do please help MDCRC to show you a way to share your concern for these children.

 

May 2, 2014

DMD And Nutrition

Food for thought goes the old saying but in our context it is now food for action. Children tend to put on weight as their mobility tapers down. Some children gain weight over the years due to the administration of steroids and a handful of them perhaps due to age. It is good to keep them on low fat diet yet on high protein diet with good calcium supplements. Let us try to enrich their foods with lot of colours by adding lot of veggies – orange, green, purple, yellow and what not. They are rich in minerals, vitamins, beta carotenes, calcium, and contain lot of moisture. The children fed on these diets gain a predominant source of antioxidants also which in turn help to scavenge free radicals. So, let us make the plates of our kids palatable and yummy with good nutritional values. Do join hands to share interesting recipes for kids that would add more strength to them at the same time not contribute towards gaining body weight.

 

May 16, 2014

Born As An Artist

Friends I would like to share a brilliant piece of information with you. My friend who is diagnosed with DMD is on top of the world in my heart. He has dedicated himself to music and plays some of the finest keyboard notes ever heard. He has been a source of inspiration for so many. His notes are the speech of angels and makes one feel so heavenly. My friend has been practicing since his childhood and it is a passion for him. His source of joy, courage, happiness, support and everything is his music for him.

 

August 12, 2014

Happy Birthday To All!

May you blow your candles and may all your wishes come true on your birthday dear all. I had been to MDCRC as a visitor one fine day during the multidisciplinary care and to my surprise I saw candles blown down with a birthday bash. Yes the team was celebrating the birthday of a DMD kid who was their patient. It was such a wonderful day to see the kids smile and laugh and clap hands in joy cheering up the birthday boy. Well, I wish we had chance to greet each and every kid on their birthday which is a very special day. But no, we don’t get to meet every kid on their respective birthdays. But I would like to make a mention that each day is a birthday for us. Are you amused at this? Each day we are born alive and new into this world. Each day dawns new with new horizons and lot of hope. So everyday it is a new day and it is the birth of a new day for Us. So it is a very HAPPY BIRTHDAY TO EACH OF US EACH DAY. Let us rejoice each day and celebrate and live the day to the fullest extent. From this perspective, I greet all of them.

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WHY

Public Health to us at MDCRC is about the community at large. The health of the community at different levels and when seen through different perspectives becomes a subject which is complete, holistic and is a melting pot for a plethora of technical disciplines. At MDCRC we do align with a goal of working for community health by working on modular projects related to Women and Child health, disease prevention, Health informatics, Community building and its associated research, Water resources, Arts, Indic Sciences, Cultural issues which are relevant to the contemporary generation. The style which we adopt is to focus on totally neglected aspects and form a working model towards a better situation. The need for this approach is to bring back the glory of humanity in general and which percolates to a healthier India.

The disorders in current focus are Orphan disorders, meaning disorders whose numbers are said to be less (in the Western diaspora) which neither doesn’t majorly impact the community’s currently used health metric nor does it provide a base for extensive drug research and its production. This view is only true until the numbers are low and also the way we look at Public health in general. There had been no concerted efforts in the domain of Orphan disorders in India. Mission of ours then, was to bring the science, the services pertaining to a particular problem statement and which thereby gives rise to an evolution of a model. This forges a way of approaching Health from a community standpoint thereby offering an impactful experience to all stake-holders. This is where the core culture MDCRC comes in where we believe that in Public Health domain in particular, the science and the associated services need to reach mankind at large without a number bias or number crunching.

With a background in Biochemistry and Genetics, Dr. Lakshmi, in 2006 had started working on genetic disorders with specific emphasis on community building.

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