Messages Of Hope

Ricky Tsang: Tips for Duchenne Families

rickytsang01As a motorized madman, Ricky isn’t looking to be an inspiration, but instead uses his peculiar sense of humor to find a little ridiculousness in life.  His writing focuses on romance, for his lifelong dream is to make every girl throw up, either orally or optically. His full blog can be found at dearricky.com. Ricky passed away in 2016, but his spirit and inspiring words will always live on. We are  honored to post his tips for families with Duchenne, as they are his firsthand advice and thoughts which can truly help families work through the tough times.


Be prepared for power outages

Always, always, ALWAYS be prepared for power outages with batteries, gas generators, and fuel nearby. Hospitals will most definitely give assistance, but nothing is guaranteed.  The more options and backup plans, the safer you are from danger.

Never hesitate for emergency
When your child is not getting better from being sick, or if his condition is out of the ordinary, NEVER hesitate to visit emergency! I cannot stress this enough because if you let it fester, things can easily make a turn for the worse.  If you’re worried about the waiting room, make him wear a mask.  Risks are necessary sometimes, and with this disease, prevention is always the priority.

No need for sorry
If you’re having a bad day (health wise) and it’s getting tough for your family as well, remember not to say you’re sorry. Your parents would appreciate it much more if you just said thank you, because you know what?  You’re in it together, and apologies are unnecessary.

Remember the importance of your child’s need for expression
I understand that many are concerned about the anger phase, but it is necessary.  By all means, encourage your boy to be happier and not to dwell on the negative.  However, never discourage his anger because in the future, he will need it to survive when things get tough.  Our emotions are nothing more than a form of energy, and to be resourceful, to harness the strength we have within ourselves, is who we are.

When it comes to bullies, don’t ever be afraid of going to a teacher, friend, or family member for help
There is no shame that you can’t defend yourself physically, so remember to always protect yourself by being smart.  You have enough to deal with as a child and there is no point in getting hurt!

Remember that your parents are always proud of you
It makes no difference, how limited your abilities are.  As long as you continue doing the best that you are able, that is what matters in the end

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