Imagine this . . .
You are lying in your bed, unable to move. Your arms and legs feel like lead. You are hungry and you need to go to the toilet. But you can’t move. You can’t even move your arm to reach a button to notify anyone that you need help. You keep on willing your arms to move, but they don’t react. Your mouth is dry and you need a drink of water – where is someone to help you? And then you are hit with the agony of an itchy nose. Aaaarrrggghhh!! It is driving you insane because you can’t move to scratch it. Oh my god, will someone please come and help me! I hope it never comes to this for my son.
When we were first told that Jahan had Duchenne Muscular Dystrophy, we were devastated. We couldn’t comprehend the fact that our son could possibly stop walking and end up in a wheelchair or his life would be filled with so many challenges. But that’s only part of it, and I’m beginning to realise the actual reality of this disease.
So what is Duchenne Muscular Dystrophy (DMD)? Generally, DMD is not diagnosed in infancy. According to Wikipedia, symptoms usually appear in male children before age 5. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include enlarged calf and deltoid muscles, low endurance, and difficulties in standing unaided or inability to climb stairs. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are fully wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including serious curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD is around 25, but this varies from individual to individual. (Thank you Wikipedia!) It’s a disease that affects 1 in 3500 baby boys. And even though it’s genetic and sex-linked, it can happen to any child through spontaneous mutation at conception (in over 30% of cases – my son was one of the these), and it can also occur in girls (although rare).
Many people incorrectly assume that a child with Duchenne will lose the ability to walk, and nothing else. But nothing could be further from the truth. The reality is, Duchenne affects pretty much every single part of their body. Think about it – there are muscles in our legs, our arms, our torso, our neck, and of course our heart and diaphragm are muscles. Duchenne ends up affecting every single muscle, even the eyelids. And it’s when the heart and diaphragm are affected that can have a devastating result.
We never asked for our kids to be afflicted with such an insidious illness, and our children most certainly never asked for it. And yet here we are.
I have changed, I’m not the person I used to be. I miss the person I used to be, but I know I will never see that person again. Whereas I used to be happy and carefree, now there are many days I feel scared and sad. And I’m on a mission to give my son (and my daughter) the best life possible, even if that means upsetting others in the process. I’ve learnt that life is not a popularity contest, but I’ve also learnt that life is short and uncertain, and time is too precious to waste.
I read from another mother with a child suffering from the same ailment as Jahan…..” living with Duchenne means a lifetime of doctors, medications, appointments, school struggles, expenses, and heartbreak. It puts mothers and fathers under stress that no marriage should have to try and survive. It means siblings get left out, pushed aside and ultimately left behind by their brothers illness. Duchenne alienates family members and rips apart friendships. Duchenne hurts, both physically and emotional . It is a backache from too much lifting, and a headache from too much crying. Living with Duchenne means heartache, helplessness, fear, and grief. It is a lesson on patience, acceptance, and loving even when it’s hard. And it gets hard, for all of us.”
So if you are a family member or a friend of someone living with Duchenne, please try to remember what they are going through. Please remember that they need your support, and they need your love. Most of all, they need you there when times get especially tough or overwhelming. Please don’t judge them, and don’t put such high expectations on them, and please try to show both understanding and compassion. Let this blog be a turning point for you, so that you now truly understand what “living with Duchenne” means and use your knowledge to make a difference. And never, ever, ever make us feel bad because we’ve changed and are no longer the person we used to be. The more understanding and support we have, the more awareness and funds we can raise, and the faster research will progress. And the easier our lives will (hopefully) be.