This weekend was a really meaningful weekend for me.
Though I've been doing volunteering for many years, this is actually the first time I attended such a camp where I had the chance to look after a disabled child, see to their daily living needs i.e., showering, going to the toilet, eating etc. Usually, all I do is just visit them, stay for a couple of hours, then off I go. I never had an inkling that it was that tough. Yes, my sister's disabled too but her condition is way much better than that of the children in my camp.
The children mainly suffered from a genetical disorder commonly known as Muscular dystrophy (MD).
Muscular dystrophy (MD) is a genetic disorder that weakens the muscles that help the body move. People with MD have incorrect or missing information in their genes, which prevents them from making the proteins they need for healthy muscles. Because MD is genetic, people are born with the problem - it's not contagious and you can't catch it from someone who has it.
MD weakens muscles over time, so children, teens, and adults who have the disease can gradually lose the ability to do the things they take for granted, like walking or sitting up. Someone with MD might start having muscle problems as a baby or their symptoms might start later. Some people even develop MD as adults.
There are several major forms of muscular dystrophy that affect teens, each of which weakens different muscle groups in various ways.
Duchenne (pronounced: due-shen) muscular dystrophy (DMD), the most common type of the disease, is caused by a problem with the gene that makes a protein called dystrophin. This protein helps muscle cells keep their shape and strength. Without it, muscles break down and a person gradually becomes weaker. DMD affects boys. Symptoms usually start between ages 2 and 6. By age 10 or 12, kids with DMD often need to use a wheelchair. The heart may also be affected, and people with DMD need to be followed closely by a lung and heart specialist. They can also develop scoliosis (curvature of the spine) and tightness in their joints. Over time, even the muscles that control breathing get weaker, and a person might need a ventilator to breathe. People with DMD usually do not survive beyond their late teens or early adulthood.
Becker muscular dystrophy (BMD), like DMD, affects boys. The disease is very similar to DMD, but its symptoms may start later and can be less severe. With BMD, symptoms like muscle breakdown and weakness sometimes don't begin until age 10 or even in adulthood. People with BMD can also have breathing, heart, bone, muscle, and joint problems. Many people with BMD can live long, active lives without using a wheelchair. How long a person with BMD can live varies depending on the severity of any breathing and heart problems.
Emery-Dreifuss (pronounced: em-uh-ree dry-fuss) muscular dystrophy (EDMD) typically starts causing symptoms in late childhood to early teens and sometimes as late as age 25. EDMD is another form of muscular dystrophy that affects mostly boys. It involves muscles in the shoulders, upper arms, and shins, and it often causes joint problems (joints can become tighter in people with EDMD). The heart muscle may also be affected.
Limb-girdle muscular dystrophy (LGMD) affects boys and girls equally, weakening muscles in the shoulders and upper arms and around the hips and thighs. LGMD can begin as early as childhood or as late as mid-adulthood, and it often progresses slowly. Over time, a wheelchair might be necessary to get around. There are many different types of LGMD, each with its own specific features.
Facioscapulohumeral (pronounced: fa-she-o-skap-you-lo-hyoo-meh-rul) muscular dystrophy (FSHD) can affect both guys and girls, and it usually begins during the teens or early adulthood. FSHD affects muscles in the face and shoulders and sometimes causes weakness in the lower legs. People with this type of MD might have trouble raising their arms, whistling, or tightly closing their eyes. How much a person with this form of muscular dystrophy is affected by the condition varies from person to person. It can be quite mild in some people.
Myotonic (pronounced: my-uh-tah-nick) dystrophy (MMD) is a form of muscular dystrophy in which the muscles have difficulty relaxing. In teens, it can cause a number of problems, including muscle weakness and wasting (where the muscles shrink over time), cataracts, and heart problems.
Congenital muscular dystrophy (CMD) is the term for all types of MD that show signs in babies and young children, although the MD isn't always diagnosed right away. Like other forms of MD, CMD involves muscle weakness and poor muscle tone. Occurring in both girls and boys, it can have different symptoms. It varies in how severely it affects people and how quickly or slowly it worsens. In rare cases, CMD can cause learning disabilities or mental retardation.
The life expectancy (in other words, how long a person may live) for many of these forms of muscular dystrophy depends on the degree to which a person's muscles are weakened as well as how much the heart and lungs are affected.
Majority of the boys in wheelchair suffered from DMD. Seeing them race around the compound in their motorised wheelchair, one could never imagine the kind of pain they go through everyday, the kind of pain they have to live with till the disease kills them one day. Neither can one imagine the torment their parents have to live with day after day, seeing their children suffer in pain helplessly...
I went to this camp without any expectations and thought it was just like any regular volunteery work I always do. But this was a real eye-opener...
Ever heard of bed sores? It's ulcers that occur on areas of the skin that are under pressure from lying in bed, sitting in a wheelchair, and/or wearing a cast for a prolonged period of time. It usually develops when blood supply to the skinis cut off for more than 2 to 3 hours. As the skin dies, the bed sore first starts as a red, painful area, which eventually turns purple. If left untreated, the skin can break open and become infected. A bed sore can become very deep, extending into the muscle. Once it develops, it is very slow to heal.
In the past, I used to think that bed sores would only develop like if people are in coma. As a result of their inactivity, they develop bed sores. This camp has really been an eye-opener... During this 2 day 1 night camp, I witnessed how people suffering from MD has to be turned and flipped over in bed like every 2 hours or so when they are sleeping. Otherwise, bed sores would develop and they would be in even greater pain...
Imagine how much hard work that would be for the caregiver... Like it's a never-ending job, with no annual leave to speak of... They got to be totally dedicated and be without complaints whatsoever...
It really breaks my heart... to see the pain they go through... The little things which we all do so effortlessly everyday like holding a spoon or even drinking water from a cup, is but a challenge to these children with MD. Most of them have to use a straw to drink water from a cup as their wrists is weak and they are unable to control or make use of certain muscles. Some have already deteriorated to the stage where they are unable to control their neck muscles and even need assistance in moving their head...
It pains me even more that they, though happily chatting with me here today, all young and innocent, may not live beyond their adulthood... It's painful, it's heart-wrenching... It tugs at every chord of my heartstrings and I feel so much for them and their family.
Sometimes, I think I really complain too much. This camp has put things into perspective & made me appreciate the little things in life more. Like how fortunate I already am to be able to wake up every morning in my own room, step out of my bed unassisted, choose what I want to wear, take a shower myself and walk down the stairs of my apartment and take a bus to work all by myself... All these, in itself, is already a big blessing. Who knows maybe one day, we too might need the help of others in even doing these simple tasks... who knows right? Life's unpredictable... which is why I've always believe in doing my best for the less fortunate as long as I have the ability to... I can't promise there won't be times where I'll not be lazy and slack... but I'm sure as long as I am capable of doing so, I would never not do whatever is within my capacity to help when help is needed... be it physically or financially...
This, the ability to help others, I think, is also in itself, the biggest blessing amongst all...
